Not For Profit Organisations and Neurological Care …...Not For Profit Organisations and Neurological Care Impact and Innovation An NAI publication for European Month of the Brain,

Coleraine House, Coleraine Street, Dublin 7Phone 01 8724120 Fax 01 8735283email [email protected] www.nai.ie

Not For Profit Organisations and Neurological CareImpact and Innovation

An NAI publication for European Month of the Brain, May 2013

Welcome

In May 2013, Ireland will host the European Month of the Brain as part of its EU presidency. This places Ireland in a unique spotlight in terms of how we are meeting the needs of the over 700,000 Irish people living with a neurological condition. As the national umbrella organisation for not for profit neurological organisations, the Neurological Alliance of Ireland (NAI) has been at the forefront of highlighting the continued serious deficits in our neurological care services. Throughout the month of the brain we will be stressing the fact that, as the host country, Ireland has a long way to go to even come close to the standards of our European partners in meeting the needs of those with neurological conditions. However, as we prepare to stand in the European spotlight, we have an opportunity to highlight our strengths as well as our challenges. No one can doubt the commitment and dedication of all those working in our neurological care services and the contribution they make, every day, to the lives of people with neurological conditions and their families. This publication aims to provide an insight into how not for profit organisations are making a difference in the daily lives of thousands of people with neurological conditions and their families. Not for profit organisations are a significant partner in the provision of neurological care services in Ireland and represent the key to building and improving the primary and continuing care infrastructure that is critical to the management of neurological conditions. From diagnosis/onset through to the long term impact of living with a neurological condition, these organisations provide a vital framework of community based specialist services and supports. The knowledge and expertise they have developed over the years has made them an essential source of information and training for staff working across the health services. Critically, they address the challenge of linking healthcare and other supports to provide effective long term case management of the complex needs of people with neurological conditions and their families. Through the development of accredited programmes and specialist staff, and their support for and implementation of evidence based practice, they have led the way in terms of innovation within neurological care services in Ireland. Above all, they inform, support and empower family carers, the most vital resource we have in terms of our neurological care services. We are aware that we do not do this work in isolation. We are reliant on the expertise, commitment and energy of healthcare staff both in the hospital and community, academics and researchers and policy makers who work together with us as service providers, research partners and creative collaborators to design and deliver effective responses to current and emerging needs.We hope you enjoy this publication and we would like to take this opportunity to thank, and to celebrate, all those who continue to work with us to improve the lives of people with neurological conditions throughout Ireland.

Mags RogersNAI Development Manager

Neurological Alliance of Ireland May 2013

Not for Profit Organisations: Services that make a Difference

MGA is a charity that supports people with the autoimmune, muscle weakening disease Myasthenia Gravis (MG). MGA’s main objectives are to provide comfort and support for people diagnosed with MG, increase public and medical awareness of MG and support medical research projects to find a cure for MG.

MG can be an isolating disease, as are many neurological and autoimmune illnesses due to their [often] hidden nature. Patients feel misunderstood, alone and that people don’t understand what it means to live with MG on a daily basis. Therefore MGA’s work connecting sufferers through support groups and branches is vital to help MG Patients feel less isolated. Patients tell us time and again the difference it makes to them just being able to talk to other sufferers going through similar difficulties or being to talk about treatment experiences or ways to cope with ever present fatigue and weakness.

MGA are currently working hard at developing its branches to facilitate outreach for MG Patients and those still waiting for a diagnosis and are working at growing an offshoot for younger sufferers who often face different challenges in school or college. For MG patients the lack of understanding and awareness of the condition is a major hurdle, from medical diagnosis and treatment, to dealing with family, friends and colleagues and this is where MGA’s ongoing campaign to raise awareness is so important. Working with our Patron, Ronnie Whelan – whose own daughter suffers from MG – enables MGA to share the MG story in the media, raising the profile of the disease with the public and reaching out to sufferers who may still be trying to get a diagnosis for their condition or find support. Through the use of social media we can at the same time reach and connect sufferers (regardless of geographical location) and get MG into the public eye. Through this medium we have brought together hundreds if not thousands of sufferers from Ireland and around the world – all quite desperate for information and contact and we continue the push to reach more MG Patients and potential supporters through these channels.

Unfortunately for many sufferers, awareness of MG in the medical profession is still sporadic – many GPs are not aware of the disease or don’t know enough to recognise symptoms and access to

neurologists who have a specialty in the area can be a lottery - often with excessively long waiting times. These delays in diagnosis and access to the correct treatment can have a hugely detrimental effect on the longer term prognosis and quality of life for the MG patient.

The Association works – with the help of our supporters – to get information packs to GPs helping to create an awareness of the condition and also lets GPs know of the Association’s existence and our support role.

MGA hopes to launch an ongoing campaign working with opticians and other eye specialists to raise awareness and educate. One of the most common early symptoms of the disease,

drooping eyes and blurred vision, brings the sufferer to an eye specialist and it is often via this route MG is first identified and specialist diagnosis sought.

We work closely with a number of specialists and in particular the Neurology department at St Vincent’s Hospital in Dublin where MGA funds a specialist MG nurse to work alongside the consultants, providing additional patient support, advice and care.

With these specialists (both in Ireland and internationally) MGA host a national conference annually giving sufferers and medical professionals access to experts and a chance to network, share information and ask questions. It is an opportunity for the latest developments and research to be shared. MGA helps fund research projects in a number of centres, universities and hospitals.

Myasthenia Gravis Association

Multiple Sclerosis Ireland: Informing, Supporting and Caring for the MS community

Not for Profit Organisations: Services that make a Difference

MS Ireland is the only national organisation providing information, support and advocacy services to people with MS, their families, carers, health professionals and others interested in MS. We operate in every county in Ireland. Our mission is ‘to enable and empower people affected by MS to live the life of their choice to their fullest potential.’

Regional OfficesMS Ireland has ten regional offices located in each of the old health board areas. Each office is staffed by at least one Regional Community Worker and admin support. The key services provided by the regional team include:

Individual and Family Support• – This is a casework service where our professional trained staff work with the person with MS or/and their family to address any issues or concerns. These issues may include those related to health and wellbeing, emotional factors, available services or welfare needs.Living with MS Programmes • - We provide a range of programmes including newly diagnosed seminars, support groups, physiotherapy and exercise classes, symptom management sessions and other information and professional advice programmes. These are run for people with MS, carers, families and health professionals.Counselling• - This is offered on a time limited basis to people with MS. In a confidential environment, a counsellor works with the person to explore skills and enable people with MS to better

cope with their illness and related issues.

Getting The Balance RightThis is our physiotherapy and exercise based health promotion programme, open to everyone with MS regardless of ability. Our collaboration with The University of Limerick in research and delivery has meant that the programmes are tailored to the individual’s specific needs. Participants can take part in one-to-one or group classes in activities like yoga, physiotherapy and gym work. Each person is typically assessed before and after a 10 week course and every programme is run by a physiotherapist or trained physical therapy provider.

This work of course all needs funding and MGA receive no government help – relying 100% on the generosity of our supporters and donors and our own fundraising efforts, a continuing task made all the more difficult in these challenging times.

Contact DetailsWebsite: www.mga-charity.ieSocial Media: facebook.com/mgaireland, twitter.com/mgairelandPhone:065 6838270E mail: [email protected]

MS Ireland operates in every county in Ireland

Local Services and Activities

Chartered Physiotherapists and trained physical therapists can

work in a group setting or one to one with people with MS to

maximise their ability and independence


Our Regional teams also work closely with other community and voluntary organisations in their localities including residential and respite care providers, local authorities, community development associations and clinicians and health professionals based in acute and community settings.MS Ireland welcomes referrals from health professionals to any of our services.

Voluntary BranchesMS Ireland operates 39 voluntary Branches which are run by volunteers who have MS or have a loved one with MS. Branch activities vary from Branch to Branch but common activities include social events and activities; therapies and classes; fundraising events; and a welfare system which helps people with some of the financial difficulties they may face.

National Services and ActivitiesThe MS Care Centre

The MS Care Centre is the only dedicated respite and therapy centre for people with MS in Ireland. It provides short-term respite care, therapy services, neurological assessments and a range of social activities. The centre is based in Rathgar, Dublin and we welcome 12 residents per week.

We have 24 hour nursing care and a variety of therapists and staff to meet the individual needs of people with MS. Referrals are taken from all health professionals, the person themselves and the family. We consult with the person with MS and their GP to ensure their needs are appropriate for respite care.

A dedicated MS Nurse is available to residents during their stay and is able to do a full assessment with the person,

looking at their physical and emotional well-being. She can then work with other therapists in the centre to work on certain problem areas for the resident. The MS Nurse can also make referrals to health professionals in the community.

Information Services In addition to the information given by staff in our other services we provide a range of resources:

The MS Information Line• – confidential information and support line open weekdays from 10am – 2pm. 1850 233 233www.ms-society.ie• – a dedicated website to learn more about MS, tap into services and become part of the MS communityInformation booklets, information sheets and MSnews• – a range of topics are covered including symptom management, lifestyle issues, health and wellbeing and emotions.

ResearchMS Ireland funds and collaborates on a number of research projects in both the scientific and psychosocial fields of research. We also translate and disseminate reader-friendly information to people who use our services

Advocacy and CampaigningOur regional Community Workers work with clients on individual issues and concerns. On a national platform we focus on policy and systems that impact the larger MS population. Key areas of concern include neurological care, neurorehabilitation, access to treatments, welfare entitlements and support to carers. We


Experienced nurses and care staff work with people with MS to ensure they

receive the care they need, take home strategies to improve their wellbeing and

enjoy their stay


work with a number of umbrella organisations including The Neurological Alliance of Ireland (NAI) and The Disability Federation of Ireland (DFI).

Contact Details:To learn more about MS, tap into our services and get involved in our work contact us today:Website www.ms-society.ie Social Media: twitter.com/msireland, facebook.com/pages/Multiple-Sclerosis-Ireland/212882388732409?sk=wallPhone: Head Office: 01 678 1600 MS Info Line: 1850 233 233E mail:[email protected]

Headway: A Snapshot:

“Following a traffic accident when I was sixteen years of age, I have regained, thanks to Headway, ability to continue with independent living.”

In Ireland, the consequences of Acquired Brain Injury represent a major health issue, with an estimated incidence of over 20,000 injuries annually and an estimated prevalence of disability in the region of 30,000 adults, or 0.7% of the population.

Organisation: Headway Brain Injury Services and Support – www.headway.ie

Mission: Bringing Positive Change in the Lives of People Affected by Acquired Brain Injury

Client Group: Adults affected by Acquired Brain Injury

Services available:

Rehabilitative Training Programmes•Day Programmes•Psychological Support and Therapy•Vocational Services•Community Reintegration•Information and Support•Family Support and counselling•

Locations: Dublin, Cork, Limerick, Kerry, Carlow and surrounding areas

Headway: Rebuilding Lives Following Brain Injury


Headway helps people to rebuild their lives following injury by providing rehabilitation services and support to them and their families once they return to their own community following treatment in hospital or inpatient rehabilitation.

“In the early days I was in a wheelchair, my speech was very limited. I used to just say yes or no. Headway brought me along so much that I now have 85% of my language and it is still going upwards. I learned to travel a bit and I am able to communicate with others now. My confidence is a lot better than it used to be”

Headway services help people maximise their level of independence and quality of life at home, outside the home, in the workplace, in family roles and in wider social settings.

Vital StatisticsLast year, Headway made a positive change in the lives of over 1000 individuals affected by acquired brain injury by providing around 80,000 hours of rehabilitation service from our locations based in Dublin, Cork, Limerick, Kerry and Carlow. Two thirds of clients were male, and just under half of them sustained their injuries through traumatic events such as accidents or falls. The remainder sustained their injury through non-traumatic causes such as strokes, brain haemorrhage, or other cerebrovascular cause.Additionally, the Headway Information and Support service handled over 1000 requests for information and support via a telephone helpline and web-based service.

Person-Centred ApproachHeadway teams work with people on goals which are both practical and meaningful to the person. Anything from how to execute a shopping trip to working on anxiety reduction and long-term psychological adjustment can fall within the scope of the work.

“I travel on my own with confidence on public transport. It gave me confidence to mix with people and socialise. I now look forward to getting out of bed on the days I come to Headway, plus I have learned to read again” – Catherine, Headway Client

Underpinning the team’s work is a detailed assessment of each individual’s strengths and needs. Each person has a key worker who will facilitate their journey through the service and monitor the progression towards the achievement of their goals.

Help with Adjustment to New RealitiesA brain injury changes everything in an instant and the consequences are often long term. For many people, psychological help is an essential part of the journey of recovery. Headway provides neuropsychological assessment, individual counselling and psychotherapy to assist people in achieving their goals.

“The impact of my work with Headway has been enormous. It’s been so helpful for my emotional wellbeing. Most importantly, it’s enabled me to continue to be independent. At a time when I might well have had to return to live with my parents, I’ve been able to function independently” – Conor, Headway Client

Skills DevelopmentHeadway’s specialised services help people develop skills to maximise their independence. FETAC approved Rehabilitative Training programmes run in our centres in Dublin, Cork and Limerick and are targeted at the specific needs of people with brain injury.

“Headway helps me to have structure in my day and helps me to regain IT skills and FETAC awards that otherwise, I would not achieve.” – Headway Client


A hallmark of these programmes is their practical and innovative approach at developing relevant skills through activities as diverse as boat building, community radio and horticulture as well as more traditional classroom based activities.

Community Reintegration and Return to WorkOur Community Reintegration teams work individually with clients to identify barriers to getting out and about in the local community or back to work. Teams have helped people to access their local gym, go shopping, use public transport, join local clubs and societies, volunteer and have provided the necessary support to overcome obstacles to employment.

“I have learned a lot at Headway especially how to cope with my difficulties in coping with specific obstacles.”

Family SupportThe impact of a brain injury is not limited to the individual. Families also experience a trauma in the wake of a sudden injury. Headway offers relationship counselling, family therapy, support groups and a telephone and web-based Information and Support service.

“Headway has been my lifeline and the counselling I’ve received has enabled me to think clearly again, deal with the trauma and basically get my life back on track. As I support my fiancé after severe brain trauma I need to be clear about my goals and needs for the future. Headway has helped me to do this.”

Contact Details:Website: www.headway.ieSocial Media: facebook.com/headway.ietwitter.com/HeadwayIrelandPhone: Information and Support: 1890 200 278E mail: Email: [email protected]

Parkinson’s Association of Ireland: How we change lives

1 in every 500 people or more than 9,000 people is affected by Parkinson’s in Ireland. The World Health Organisation (WHO) estimate that in the next thirty years the incidence of the condition will double; currently there is a 1 in 40 chance of being diagnosed at any stage in adult life. Although Parkinson’s is commonly associated with older people, 1 in 20 diagnosed are under 40 years old.

For the past 26 years, people who have been diagnosed with Parkinson’s in Ireland have benefited from the services provided by the Parkinson’s Association of Ireland; including access to local branch membership and support meetings. These core services are funded entirely through the generosity of the public, through donations, participation in fundraising events and sponsorship.

Living with Parkinson’s can be hugely challenging; managing to carry out daily activities is often dictated by the correct timing of medication. The physical symptoms, such as involuntary movements can cause embarrassment and frustration as well as limiting a person’s ability to carry out basic tasks. Unsurprisingly, the condition often leads to depression given the hugely challenging effect it can have on a day to day life and relationships.



Parkinson’s Association of Ireland: How we change lives

The Parkinson’s Association provides a range of support services so that people with Parkinson’s do not have to face their condition alone. Our team helps those affected to come to terms with their situation, providing an open door, reassuring support and a listening ear, whether a person has recently been diagnosed, has been living with Parkinson’s for some time or has a family member or friend with the condition. Many people have told us what a difference our services have made to them and how much we have helped to reassure them that there is a life after diagnosis.

SUPPORT-IMPROVE- CURE

The Parkinson’s Association of Ireland offer the following range of services:FreePhone Helpline:• Our Helpline service offers free, confidential and impartial advice, on coping with Parkinson’s, managing expectations, listening without judgement and providing easy to understand explanations about Parkinson’s.Specialist Nurse Support Service:• Our specialist nurse advises on management of Parkinson’s and offers guidance on how to enhance your quality of life. Our nurse is available to meet at our centre in Dublin and can also attend branch meetings throughout the country and engage with Care Homes on the best way to support residents with Parkinson’s. Specialist Nurses in Hospitals:• We provide various levels of financial support for a number of Parkinson’s Disease specialist nurses working in hospitals across the country. Branches:• Branch meetings provide emotional support, advice and friendship for people with Parkinson’s. Each of the branches throughout Ireland run various activities such as yoga classes, exercise, speech and drama, outings and information sessions. Information days held across the country (3-4 per annum)/ Quarterly magazine/Online forum:• These services provide a fundamental link between the association and its members. They also provide information to health professionals and increase awareness amongst the general public in order to achieve greater understanding and acceptance of the condition. Research• : The Parkinson’s Association of Ireland members have assisted on numerous projects, including the TRIL (Technology Research for Independent Living) at St. James’ Hospital in Dublin and several physiotherapy-related research projects. Our members have participated in research undertaken at Trinity College as well as responding to the GSK Quality of Life Survey, as part of a European research project.

The Future The services offered by the Parkinson’s Association inspire a positive outlook for people with Parkinson’s and their families. We are working towards increasing the reach of our support so that if Parkinson’s impacts you or someone you care about, you will know where to turn. We are continuing to provide the services set out above and in addition our aim is to:

Increase public understanding of Parkinson’s through an awareness campaign which highlights how the •incidence of the condition is growing amongst the population and can affect both older and younger adults. Increasing the number of Nurse Specialists in hospitals across the country to give those with a diagnosis •greater access to medical expertise and advice.Creating an education programme for Primary Health Care professionals; we are currently working on •a campaign called “Meds on Time”, designed to regulate the dispensation of medication to people with Parkinson’s when in hospital. The timing of medication can have a huge impact on the wellbeing of a person with Parkinson’s. The nationwide roll-out of this programme is entirely dependent on funding. Partnering with research centres to advance treatments and possible cures.•

Contact Details:Website: www.parkinsons.ie.Social Media: facebook.com/parkinsons.ireland, twitter.com/ParkinsonsIrePhone: Helpline 1800 359 359, Office 01 8722234E mail: [email protected]

PSPA Ireland was formerly known as the Dublin Support Group of The PSP Association, a U.K. Registered Charity which relies on voluntary donations to fund its activity. The PSP Association’s motto is “Working for a World free of PSP” and it is dedicated to the support of people with Progressive Supranuclear Palsy (PSP) and the related disease Cortico Basal Degeneration (CBD), and those who care for them. As PSP and CBD are very similar ‘PSP’ is often used as shorthand for both.

PSP (Progressive Supranuclear Palsy) is caused by the progressive death of nerve cells in the brain, leading to difficulty with balance, movement, vision, speech and swallowing. It is so called because it’s:

Progressive – • it gets steadily worse over timeSupranuclear – • it damages parts of the brain above the pea-sized ‘nuclei’ that control eye movementsPalsy – • it causes weakness

PSP is associated with an over-production of a protein called tau in certain areas of the brain. In PSP, it forms into clumps – or neurofibrillary tangles – which are believed to damage nerve cells. Early symptoms may include loss of balance and unexpected falls (usually backwards), stiffness and eye problems. These can include difficulties in looking up or down, focusing, double or tunnel vision and dislike of bright lights. Some people can experience behavioral and cognitive changes – depression, apathy, clumsiness, or tiny, cramped handwriting. Early on, symptoms may resemble those of other neuro-degenerative diseases such as Parkinson’s disease, Alzheimer’s disease, Motor Neurone disease or Multiple System Atrophy. As a result many people are initially misdiagnosed. PSP is a rare condition. Research into the prevalence of the disease suggests that there are around 4,000 people in the UK living with the condition at any one time, though neurologists believe the figure could be as high as 10,000. Based on population differences there could be as many as 700 with the disease in Ireland. There are no simple tests to diagnose PSP. Brain scans are often used by neurologists for diagnosis as they help by excluding other conditions.

CBD Cortico Basal Degeneration (CBD) is a degenerative brain disease, affecting people from the age of 40 onwards. Although there are biological similarities to PSP, with similar nerve cell damage and build- up of tau protein in the brain, the classical clinical picture is quite distinct.

Cortico • - affecting the brain cortexBasal • - also affecting other parts of the brain such as the basal gangliaDegeneration • - death of nerve cells in the brain

CBD often starts with progressive numbness and loss of use of one hand. There can also be jerking of the fingers, slowness and awkwardness and the feeling of having an ‘alien limb’ – with complex unintentional movements of one limb causing problems with normal motor tasks. As yet, there has been no research into the prevalence of CBD but it is known that it is much less common than PSP. People are often initially misdiagnosed as having Parkinson’s disease or a stroke. At the moment there is no treatment to stop or slow the progression of CBD. However, many symptoms can be treated and are usually managed in a similar way to those for PSP.

PSP Association and PSPA IrelandPrior to April 2012, the PSP Association (PSPA) arranged meetings every six months for the Dublin Support Group and provided their PSP/CBD Nurse Specialist to attend, run the meetings, advise patients and carers of the latest developments and deal with any issues raised by those present. Due to reduction in donations received and relevant staff cutbacks, PSPA advised the Dublin Support Group that they were no longer able to do so and encouraged the Dublin Unit to organize and run their own support group meeting. A committee of four volunteers was set up in July and since then have run successful Support Group meetings in November 2012 and March 2013. To recognize the fact that membership of the group was open to all PSP/CBD sufferers in the twenty–six counties, the name was changed to PSPA Ireland at the beginning of this year.

PSPA IRELAND: Supporting Irish people with PSP and their families


Rehab Group: Providing vital services to people with neurological conditions in the West of Ireland

Since its formation the committee has been active in raising awareness of PSP and CBD by attending meetings of various medical patient oriented bodies. They have become members of the Genetic and Rare Disease Organisation (GRDO), Irish Platform of Patients’ Organisations, Science and Industry (IPPOSI), the Disability Federation of Ireland, Institute for Public Health in Ireland (IPH), The Irish Hospice Foundation, Neurological Alliance of Ireland (NAI), Northern Ireland Rare Disease Partnership (NIRDP) and the Patient and Client Council (Northern Ireland Group).

The support group meetings are the most important part of the committee’s activities as they give persons affected by PSP and CBD, their families, friends and carers the opportunity to meet and give support as well as chatting informally and making new friends. They also give the groups the opportunity to decide what they want from their meetings, be in full control of how frequently they meet and what activities and speakers they would like to have at meetings. The support group meetings are designed to be informative and give the members the opportunity to raise and discuss the issues they meet in dealing with PSP/CBD in a secure environment. Speakers for the meetings are selected to impart knowledge that helps patients and families to meet the needs of these diseases.

Contact DetailsWebsite: www.pspassociation.org.ukPhone Tel 01 8375020 or 01 8383606. PSPA UK Helpline 0044 300 01 10 122 E mail: [email protected]

Rehab Group provides a range of services for people with brain injuries and neurological conditions across the country through our health and social care division, RehabCare and our training and employment division, National Learning Network. Here we focus on the range of services available to people living in the West of Ireland.

In the West of Ireland RehabCare provides brain injury services to individuals requiring specialist high support accommodation, tenancy support, transitional living and home support services. In addition, RehabCare has a specific outreach service which provides therapeutic support to people following a brain injury. This service is delivered by a trained specialist team following assessment by a neuropsychologist and a neuro-occupational therapist, through a case management approach.

RehabCare Ms Outreach Service is an innovative service for people with multiple sclerosis living in Galway. In partnership with MS Ireland and the HSE in Galway, RehabCare provides place to provide therapeutic supports to people with multiple sclerosis who are experiencing difficulties in relation to memory, attention, communication, executive functioning, visual perception and language. Our specialist assessment team works with the individual, their family and support circle to devise a personalised, holistic rehabilitation programme plan to support the person to attain identified goals in these areas of their lives.

The RehabCare team uses a combination of remediation and compensatory techniques as well as guidance on lifestyle management. This programme is currently available to eight people living in Galway and many more have expressed an interest through the service’s waiting list. RehabCare, MS Ireland and the HSE work closely together and this innovative partnership approach allows for valuable shared learning as well as a strong collaborative approach.

PSPA IRELAND: Supporting Irish people with PSP and their families

Rehab Group: Providing vital services to people with neurological conditions in the West of Ireland

RehabCare has also held ‘Symptom Management Days’ in Galway with over 120 people attending. These information days provide vital information not only to the individuals, but also family and friends as everyone has a role to play in managing symptoms and pain.

Quest Brain Injury servicesQuest Brain Injury Services, part of the National Learning Network, works with people from Galway, Mayo and Roscommon who have had an acquired brain injury (ABI). It offers a community-based rehabilitation programme to more than 50 survivors of an acquired brain injury and their families. The programme addresses areas such as brain injury education, memory, general cognitive (thinking) skills, daily living skills, literacy and numeracy, computers, psychological support, vocational exploration, and work placement.

Quest Brain Injury Services recently published a book entitled Reflections which gives an insight into the experiences of its clients who live with an acquired brain injury. By sharing their personal stories, participants hope that they can help people who acquire a brain injury, their family and friends to gain a better understanding of this life changing event.

Gemma Noone is just one of the people who shared their story. In March 2011, at the age of 32 Gemma was a busy working mum who travelled long distances to and from work, she was studying for her Master’s degree and was also planning her wedding. She put a pain in her arm down to a suspected trapped nerve. Gemma recalls the moment her life changed, “I was typing at my desk at work, but then I realised my left hand was no longer typing. When I tried to stand up, I couldn’t stand on my left leg. I tried to shout for help but my speech had gone. I was taken to the company doctor who sent me straight to hospital. In A&E, I went for a CAT scan which identified I had a bleed on the brain.

Following a short stay in hospital, Gemma returned home. “At home I felt abandoned. I couldn’t get my head around anything. I was scared to leave the house or have anyone visit. My stroke consultant, who understood how debilitating depression and anxiety could be, requested a cognitive therapist help me. I was at a stage where I just wanted to close out the world. There’s where Quest came in. They helped me to adjust and to realise that I can still do things. There is hope and there are options out there. Fatigue and panic attacks still affect me but I am learning to manage them.”

Recently, the Rehab Group has worked to further enhance the services it provides to people in Galway. Chaired by the HSE, RehabCare ABI team and Quest Brain Injury Services operate a new referral and assessment service for people in Galway. It aims to support and to up-skill the person, their family and support network through person-centred planning of service provision.

Rehab is an independent international group of charities and commercial companies which work towards a world where every person has the opportunity to achieve their potential. Over 3,800 staff members provide high-quality health and social care, training and education, and rehabilitation, employment and commercial services to over 80,000 and their families in more than 260 locations.

Contact DetailsRehab Group provides a range of services for people with brain injuries and neurological conditions across the country through our health and social care division RehabCare and our training and employment division National Learning Network.

For more information see www.rehab.ie www.rehabcare.ie www.acquiredbraininjury.com www.nationallearningnetwork.ie


Impact of Huntington’s DiseaseHuntington’sDisease (HD) is an inherited neurological disorder that causes brain cell degeneration leading to progressive deterioration of the physical, cognitive and emotional self. It is multifaceted and can cause a wide variety of symptoms:

Physical symptoms can include involuntary movements, slurred speech, •swallowing difficulties and problems with balance.

Cognitive symptoms may include changes to organisation, regulation and •perception skills. This can affect function including decision making, reasoning, initiative, emotional engagement, mental flexibility, impulse and temper control, judgment and awareness.

Psychiatric changes are varied with depression being the most common. Other •symptoms include changes in personality and mood such as irritability, apathy and disinhibition.

Most people with HD develop symptoms in their forties and fifties, although there may be subtle changes much earlier. About 5-10% of patients have onset of symptoms before 20 yrs (Juvenile HD) and 10% have onset after 60 yrs. The illness usually lasts about 15-25 years and death is often due to the consequences of the immobility, general debilitation and malnutrition. Each child of a person with HD has a 50% chance of inheriting the disorder. People at risk live with the worry of developing symptoms and the implications for their future. A diagnosis of Huntington’s disease in a family is very distressing and creates complex challenges for the person diagnosed and their family. The nature of symptoms and the genetic aspect of the condition can contribute to feelings of fear and isolation and a reluctance to seek professional help. As the condition progresses many people lack awareness of the severity of their symptoms and the consequences of their uncontrolled emotions and impulses. This can cause problems with relationships. Contrary to previous understanding of HD, symptoms can be managed effectively with regular clinical assessments, a multi-disciplinary care plan and good nutrition.

Huntington’s Disease Association of Ireland ServicesHuntington’s Disease Association of Ireland (HDAI) is a national voluntary organisation providing consultation, information and individualised support to those diagnosed with HD, those at risk, family carers, HD family members and health and social care professionals. The Association avails of up to date information made available by International HD experts. Services include:

A national information, support and advocacy service for people with HD; people at risk, family members and carers •A Family Support Officer to provide one to one support•Access to counselling •Support group meetings /carers workshops in Dublin, Cork, Mayo / Roscommon and Limerick•An annual information meeting and respite weekend •Publications including Facing HD, A handbook for Family and Friends; Understanding Behaviour; Caregivers •Handbook and Physicians Guide provided on request and available onlineOnline links to international research updates and standards of care guidelines•Information seminars for professionals•A quarterly newsletter and annual magazine•Provision of aids and appliances •Therapeutic treatments for people with HD •

Support meetings and the respite weekend encourages people to share coping strategies and practical information on care. Greater awareness of HD helps to overcome stigma and encourage people to avail of services. Participants feedback on our 2012 Information Meeting and Respite Weekend included:“Thank you so much for the weekend, we really did enjoy it, it is great to see and chat with other people in the same boat as us”.“I was especially anxious when we arrived …..No matter what happens in the future, I know that we are not alone, we have the support of yourselves at HDAI and also the other families affected by HD. It was a privilege to be part of a wonderful weekend, thank you again.” “Thank you all for another lovely weekend. We all had our sad moments but the atmosphere and people around us was a great help.”

Contact Details:Website: www.huntingtons.ie Phone: Tel: (01) 872 1303 Email: [email protected]

Huntingtons Disease Association Of Ireland: A vital resource for individuals, families and health professionals


Over 700,000 people in Ireland are living with a neurological (brain)

condition

In May, the Neurological Alliance of Ireland will co-ordinate a month long series of events

around the country including:

Wellness days for people with neurological conditions and their families

Conferences and seminars Coffee mornings and social outings

And lots lots more…

Find out what’s happening in your local area and get involved by visiting www.nai.ie

Did you know that May 2013 is the

EUROPEAN MONTH OF THE BRAIN?


Personal Experiences and Testimonies from Service Users

By Avril Dooley: Project Leader - Dementia Friendly Communities, The Alzheimer Society of Ireland

Dermod Slevin received a diagnosis of Lewy Body Dementia three years ago. Although, he had shown no signs or symptoms his GP referred him to a specialist older person service for a more detailed health check. It was here that he received his diagnosis of dementia.

He described receiving this diagnosis as “a shock to the system” and was told to “go home, not to worry and forget about it.”

One of the main issues Dermod has as a result of his dementia is that his speech has been impacted – he now has a stammer and will sometimes struggle to recall words and names. He finds that particularly when he is under pressure or asked a question that his mind will go blank.

Initially he was very depressed, however things started to change for him when he attended an Alzheimer Café and he had the opportunity to meet other people affected by dementia. Dermod describes the Alzheimer Café as a place of great “warmth and friendliness”.

By the time he attended the Alzheimer Café, Dermod had also begun to tell other people about his diagnosis. He says “I tell everyone and people have stopped me on the street to congratulate me for speaking about it”.

Through The Alzheimer Society of Ireland, Dermod has been offered a number of opportunities for speaking out about living with dementia. He was interviewed by various newspapers including the Irish Examiner and says “It has opened new doors for me – I say I’m going to work. If I’m not doing something I’ll lie on the couch all day”.

He is part of the first European Working Group for People with Dementia representing Ireland and said that this has given him “great opportunities to meet others and exchange ideas”.

At the meeting in Brussels, Dermod also had the chance to discuss the issues he faces with Nessa Childers, MEP (Ireland). He met her in the European Parliament at the end of 2012 and spent forty minutes with her explaining the challenges of living with dementia and also outlining the opportunities that have been presented to him as a result of speaking openly about his diagnosis.

Last July the Government called for submissions to Ireland’s first National Dementia Strategy. Along with four other people with dementia and four carers, Dermod consulted with The Society about his views on diagnosis, information and services, maintaining yourself in your home and in your community, living well with dementia and residential care. The views we heard that day formed an important part of our submission to the National Dementia Strategy.

Dermod also spoke at ‘The Alzheimer Society of Ireland National Conference’ in October 2012 where he received a standing ovation following his talk. He used this opportunity to describe what it means to him to be a voice for people with dementia. Dermod said “I hope that by speaking out about living with dementia this will help others and show that when given a voice at an early enough opportunity people with dementia have something very meaningful to offer.”

A highlight for Dermod was in December 2012, when he met with the President of Ireland Michael D Higgins at Áras an Uachtarain. The Alzheimer Society of Ireland had organised this volunteer recognition event to thank all

Living with dementia in Ireland


The Migraine Association of Ireland (MAI): Essential support for people living with migraine

those who have volunteered their time, energy and expertise over the past 30 years. Dermod said about the visit that “meeting the President was one of the greatest honours of my life and it brought tears to my eyes”.Dermod is a founding participant of the first working group for people with dementia in Ireland. He emphasises the importance which this group has to him when he says that the working group “has given me an insight into other people’s experience and also a sense of purpose and confidence. You are talking to others who understand and who are going through the same experiences.” Dermod has played a huge role in enabling The Alzheimer Society of Ireland to bring forward the voice of others living with dementia in Ireland.

Contact Details

Our free and confidential Helpline service is for people with dementia and their families, carers and anyone concerned about dementia. We also work with health and social care professionals and students.

From May 1st we are open Monday to Friday 10 am to 5 pm, Saturday from 10 am to 4 pm. Our dedicated team of Helpline Advisors and trained Helpline Volunteers provide information and support on:

All types of dementia •how to get help locally from our network of supports and services throughout Ireland including our social •clubs, Alzheimer cafes, day care centres, home care service and support groupspractical day-to-day tips for living well with dementia•legal and financial matters, •accessing care & support in the community•and much more. •

“I have been a migraine sufferer for just over twelve months and although it doesn’t seem like a long time, I’ve been to hell and back with them.”

“I’m not ok, I lost it all, sports, husband, friends, job, independence and will to live….”

“…pain so bad that I would ask my family to punch me and knock me out as the pain was so intense.”

The following extracts are taken directly from emails received by the Migraine

Association of Ireland (MAI) in the last few months. They were not requested for the purpose of this

article – instead we asked the people who sent them permission to use their words anonymously. We believe

these emails demonstrate the impact of migraine more effectively than anything we could ever write.

“I’ve been 3 months now with migraine, to say it in weeks; I had 3 days in two weeks without excruciating pain,

but having other symptoms like light sensitivity, nausea, zero energy, etc for 3 months.



I lost my dream job due to my migraine, no other to blame, same happened with athletics. I used to win

medals, and now I’m a “something” who can barely walk….somebody who has to wait for her boyfriend to be

able to have a shower.

… I’m unable to speak fluently, it seems like if I were drunk... and I feel ashamed when people think I don’t

understand and behind me you can hear people saying that I’m drunk... I wish I were drunk! I wish I could drink

alcohol with my friends! But I don’t even drink alcohol, and going to a pub wouldn’t cross my mind. My friends

won’t even bother to invite me out; they know it’s always a “no”.

I’m not ok, I lost it all, sports, husband, friends, job, independence and will to live….I don’t think hurting myself

will solve the problem when I’m already in pain, but I do wish sometimes I could fall asleep one night and go,

without making anybody feel bad about it, not even me, so my head won’t hurt anymore and I could be free….

I should probably talk to a counsellor about how depressed I was and how (it) got worse after my job loss, but I

can’t do it, because I lost my job and I can’t afford it and I’m scared of looking for a new job when I can’t even

do interviews properly, how am I going to work? Who will employ me when I can’t even talk or walk?

So I’m only here, waiting for my migraine to go away … I’m nobody now, not a little bit of the person I used

to be and I hate this…so much now, I hate myself and I can’t even look at this pale face with black bags and

dropped eyes in the mirror.”

The MAI received this email from a migraine sufferer last August. We corresponded by telephone and email,

and arranged an appointment with one of the specialist migraine/headache clinics. We also arranged a personal

meeting at one of the local migraine awareness groups. The person in question has subsequently seen some

improvement and we remain in contact.

“I’m a 22 year old student nurse. I’ve been suffering with migraines since I was in my early teens. They

disappeared for a couple of years, and I would only get an odd one. The past two years they have become

extremely severe, going through months where I would have them every single day. With pain so bad that I

would ask my family to punch me and knock me out as the pain was so intense.

… this year I have been experiencing hemiplegia (paralysis) on one side or sometimes bilateral, pins and

needles in my face, side, hands & feet, complete inability to focus or concentrate, blurred vision, eye dots all

may be present with or without migraines.

…I’m back 5 weeks after 4 months out sick. I have three referral letters sent, one to neurology in Waterford,

one to Beaumont, and a third to the migraine clinic in cork. Waiting lists are huge and I won’t be seen for

approx 2 years.

I suppose I just wonder if you could help provide some guidance. I have been struggling with this for a long time

but I just feel like it’s having such a huge impact on my life, I don’t know if I will be able to complete my final

placement due to this. I am really sorry to bother you! And I am so grateful for any time you could take to help!


It just seems like every avenue I pursue is fruitless. And it’s great to know that there is help there!”

This story has a happy ending. The MAI arranged an appointment in the Beaumont Clinic and our migraine

specialist nurse Esther Tomkins provided clinical advice through our specialist helpline. We provided an official

letter (for employers) stating that the individual in question was receiving ongoing support from the Association,

and we stayed in contact until we received this email in March:

“I just wanted to let you know that thanks to you, I have a diagnosis of migraine with aura & chronic daily

headaches. That was after my appointment in Beaumont, Esther started me on Topamax and I am flying it. I will

be returning to finish the rest of my placement to qualify as a nurse in the next couple of weeks. I just wanted

to say, that if it wasn’t for your help I wouldn’t be in such a great position. I honestly can’t express my thanks. I

have learned so much about living with migraine. The Migraine Association of Ireland is such a fantastic resource,

I would be lost without ye. Thank You So Much, I hope that throughout my career I can help people the way you

have helped me.”

As might be imagined, this was an email we were very happy to receive.

“I have been a migraine sufferer for just over twelve months and although it doesn’t seem like a long time, I’ve

been to hell and back with them.

I’m one of the 10% that doesn’t respond to conventional therapies. I’ve literally tried them all – Topamax…

Inderal, Amitriptyline, Sanomigran, greater occipital nerve bock, Zomig, Frovex, Imigran and then there’s your

usual OTC remedies….Along with these medications come some horrible side effects but if I don’t take the

medication my migraines take a massive step backwards, although out of the last two months I’ve only had two

and a half pain free days so I don’t know is it really worth it at all, I’ve lost nearly 20lbs in the last 12 months and

I’m currently bordering on just 7 stone 2lbs. Although there are much worse things in life that someone could

be suffering from, at 22 years old I certainly would not wish migraines on my worst enemy.”

Unfortunately this young person has yet to get their migraine under control. We remain in contact.

At MAI we receive many e mails and phone calls from people in distress. We respond to every single one of

them. We have two helplines – one that directs into the MAI office and one to our specialist nurse. We will do

whatever we can to help a person in pain. We see that migraine is a very misunderstood condition. Most of the

people we speak to, even many health professionals, believe it is just a headache. It is not.

We try and educate GPs, pharmacists, nurses and all those who work in the various strands of health care

about migraine management. We run training events and information campaigns throughout the country. We

give workplace presentations to employers and employees and we host public information evenings across

Ireland.



For people whose migraines cannot be managed at GP level we have five specialist clinics – three in Dublin,

one in Cork and one in Galway. We were instrumental in setting up these clinics and they have helped an

extraordinary number of people. We will leave you with their words:

‘Membership of the MAI has changed my life. I would encourage people to join the association. When you tell

people you’ve a headache they just don’t understand. You start to question yourself…but you are not alone.”

(From a grandmother in Cork)

“It would be easier (to) count the days without a headache before - now the headaches are few and far

between. Migraines are completely under control, although very little warning when I do get them they have

significantly decreased in frequency. I have gone from chronic daily headache with migraine to a relative calm.

Thank you all again and to migraine Ireland which is where I turned when they became unbearable and needed

to do something about it. Thank you everyone.” (Left on our Facebook page).

Upcoming Events from the Migraine AssociationNational Health Professional Seminar: Saturday 11th May: (Register now, CPD points applied for)

National Migraine Conference: Sunday 12th May: (Public event, no cost to attend)

Contact DetailsWebsite: www.migraine.ie

SocialMedia:twitter.com/MigraineIreland, facebook.com/migraineirelandPhone: Helpline: 1850 200 378 or 0844 826 9323 (NI) Specialist Nurse Helpline: 01-7979848

MAI office: 01-8941280

Email: [email protected]

Mary Carr: Personal Testimony

Hearing the word dystonia for the first time brings with it a mixed set of emotions. The relief of the diagnosis after many consultations and assessments is considerable. However, having never heard about a condition called dystonia prior to the first time the neurologist mentioned the word, meant that when leaving the neurologist’s office I had so many questions. Finally having a word to describe the way in which my body had decided to independently manipulate my muscle movement, irrespective of how I would like those muscle to behave, evolves into trying to understand what dystonia actually means to my future.

What exactly is dystonia, what type of treatment is available, what is the likely prognosis and what implications would this have for me, my family and my career. Carrying out an internet search on dystonia resulted in a pleasant surprise - Dystonia Ireland. The information on the website is useful, but not nearly as much as the personal touch provided by being able to talk to the wonderful Maria Hickey at the other end of the phone line. Dystonia is not a common condition, however after talking to Maria I realised I was far from being alone. Reassurance, words of advice on lifestyle management, literature and answers to my many questions were a great help.

Dystonia Ireland: My Story


The personal interaction facilitated by Dystonia Ireland through organised social activities is a great way of being able to sit down in a relaxed atmosphere and chat informally to those affected by dystonia. I have picked up lots of useful information and more importantly, met some lovely individuals, who happen to have dystonia, in all its many different shapes and forms. The recent photographic project is a beautiful visually interesting presentation showing people living in a positive manner despite their dystonia. Access for those who progress to being recommended for deep brain stimulation surgery in the U.K. can be fraught with bureaucratic hurdles. One example is the extensive paperwork for pre-operative assessment, surgery and ongoing post-operative assessment is an ongoing daunting task when trying to book flights and keep hospital appointments and especially in the case of unplanned urgent reviews. Dystonia Ireland work hard to help in providing support in various forms, to address and overcome the many patient-centred issues associated with accessing surgical treatments abroad.

Dystonia Ireland has also been instrumental in bringing together, in scientific forums, world leaders in the research, diagnosis and treatment of dystonia. These research days provide a fantastic way of informing those affected by dystonia about current state-of-the-art research through to treatment of dystonia, in an accessible and understandable manner. Dystonia Ireland receives no statutory funding. The fundraising carried out by Dystonia Ireland is spearheaded and organised by Maria Hickey and a small team, on a voluntary basis together with our members who voluntarily organise and contribute to various fundraising events, which has resulted in significant financial contributions towards Irish-based research work on dystonia. In June 2012 Prof. Michael Hutchinson was awarded the Clinician Scientist Award by the Health Research Board of a significant HRB grant to the team of researchers in St Vincent’s University Hospital and Trinity College has validated the quality of the research started up under the direction of Prof. Michael Hutchinson since the year 2000 involving a significant on-going financial input from Dystonia Ireland.

Dystonia Ireland is a member of Neurological Alliance of Ireland and Dystonia Europe and is affiliated to Dystonia Medical Research Foundation Chicago and the National Spasmodic Dysphonia Association Chicago. So from my initial diagnosis, Dystonia Ireland has provided support, information and friendship. It has allowed for the interaction with my neurologist to be carried out in a more informed manner. The important research support provides hope for the understanding and treatment of Dystonia, which will no doubt contribute to future hope of a cure for this difficult, life changing movement disorder.

Contact Details:Website: www.dystonia.iePhone: Tel: (01) 4922514Email: [email protected]


Coleraine House, Coleraine Street, Dublin 7Phone 01 8724120email [email protected]

On the Eve of the European Month of the BrainThe Neurological Alliance of Ireland invites you to our free half day seminar“Think About it: A strategic focus on Ireland’s neurological care services”

Venue: Law Society Blackhall PlaceDate: 30th April 2013

Seminar Programme

9am-9.30: Registration, Information Stands, tea and coffee

9.30am: Opening Address: NAI Chair

9.40am: Session One: Defining the Issues Chaired by the National Lead for Acute Hospitals HSE

Fault Lines in Ireland’s neurological care services: what is working well and what challenges still remain to be addressed

-Professor Orla Hardiman: Consultant Neurologist, Beaumont Hospital and spokesperson for NAI “The Role of Centralised services in a Regionalised system”

-Dr Colin Doherty: National Clinical Lead for Epilepsy Services: “Specialist services reaching into the Community”

-“Supporting neurology in primary care”: Clinical Nurse Specialist (to be confirmed)

-Elaine Whelan, Senior S&L Therapist “Mid West Community Neurorehabilitation Team”

Panel Q and A

10.50am: Short Tea and coffee break

11am: Session Two: Proposing solutions. Break out workshops

Theme 1: Management of neurological conditions in the community: achieving a whole of health service response

Theme 2: Pathways for specific neurological conditions: identifying the key elements

Theme 3: Achieving progress in Ireland’s neurological care services: identifying key influencers and change processes that need to occur

12pm: Pathways to Independence: Acquired Brain Injury Ireland

12.15pm: Workshop Feedback and Key Recommendations

Chaired by the Clinical Care Directorate: HSE

Facilitator Feedback

Summary and Recommendations from the Conference

Q and A and Discussion Session

1pm: Lunch

Epilepsy Ireland will soon launch a new self-management resource for newly diagnosed people with epilepsy entitled “Living Well With Epilepsy - My Epilepsy Toolkit”. The toolkit is currently being finalised by Epilepsy Ireland in partnership with the National Epilepsy Clinical Care programme, led by Dr Colin Doherty. It is due to be launched this summer.

The new resource will provide information to adults and parents of children with epilepsy on the condition of epilepsy and its management and it will aid the person with epilepsy to become an expert in their own health care.

The toolkit will provide people with epilepsy with an opportunity to tailor own information needs in conjunction with Epilepsy Ireland’s support staff, who will utilise the toolkit as part of a new self-management programme. The toolkit will standardise the provision of high-quality, reliable epilepsy information nationally to newly diagnosed patients soon after the point of diagnosis and it will reduce the possibility of important information not being delivered to patient. These simple steps can help improve seizure management and quality of life, and as a result reduce hospital admissions and lower the risk of epilepsy mortality.

The toolkit will contribute not only to Epilepsy Ireland’s mission to meet the needs of everyone with epilepsy in Ireland and their families and carers but also to achieving the National Epilepsy Clinical Care programme’s stated objective of “providing the best value care for all people with epilepsy in the right place, at the right time, sharing the best available information”.

Until the establishment of the National Epilepsy Clinical Care programme, epilepsy services in Ireland, like all neurological services, had been neglected for many years. These historic gaps in support have traditionally meant that Epilepsy Ireland has been the key provider of information and support services for people with epilepsy in the country. With many years’ experience of developing information services and providing epilepsy resources, Epilepsy Ireland is ideally placed to lead on this significant project.

In recent years, the charity has produced and disseminated comprehensive guides on epilepsy for a number of specific audiences including General Practitioners, nurses, employers and schools. On all of these projects, a collaborative approach has been used where we bring together relevant professionals to jointly develop the materials. In developing the new Toolkit, a similar approach has been used, bringing together expertise from within Epilepsy Ireland in addition nursing professionals from the adult and paediatric sectors of epilepsy care:

Sinead Murphy, Clinical Nurse Specialist (Epilepsy Ireland & Beaumont Hospital),•Maire White, (Advanced Nurse Practitioner in Epilepsy, Beaumont Hospital/ ANP Lead, Epilepsy Care •Programme)Maria Keegan (Paediatric Epilepsy Nurse, Our Lady’s Children’s Hospital) •Wendy Crampton (Epilepsy Ireland Director of Services)•Paul Sharkey (Epilepsy Ireland Training & Communications Manager)•Geraldine Dunne (Epilepsy Ireland National Information Officer)•

The toolkit is an important project identified in Epilepsy Ireland’s Strategic Plan 2012-16. Meanwhile, the Standard Operating Procedures (SOPs) developed by the Epilepsy Care Programme has identified information provision at hospital level as an area that needs to be standardised across the country. Working collaboratively with the Programme was therefore a logical and mutually beneficial experience and one that has been fruitful in developing a world-class resource for newly diagnosed patients.

Epilepsy Ireland: Living Well With Epilepsy – My Epilepsy ToolkitA case study in collaboration


The Epilepsy Toolkit aims to guide people along their epilepsy journey, signposting key resources and supports along the way. It will aid people in understanding and managing their own particular diagnosis and assist them in working closely with their medical team.

The two key elements of the Toolkit are:The Epilepsy Journal, to help keep all matters relating to the person’s epilepsy in one easily accessible •place and to help people prepare and get the most from medical appointments. The journal will include a seizure diary and personalised information on medications, seizure management, the medical team, support team and appointments. Living Well With Epilepsy, a comprehensive booklet answering the most frequently asked questions about •the condition, in addition to information on psychosocial and lifestyle issues to help the individual manage their epilepsy more effectively.

Additional information will be available for download from a dedicated section of the epilepsy.ie website.

The project team has met frequently over the past year to decide on content priorities and formats, develop formats and review the core information. In the coming weeks, Epilepsy Ireland members will be consulted to ensure that the resource meets the needs of people with epilepsy and their families. When launched, the toolkit will be utilised by Epilepsy Ireland’s Community Resource Officers in conjunction with Advanced Nurse Practitioners and other Epilepsy Specialist Nurses as part of a standardised self-management programme run nationally over several one-to-one sessions.

Epilepsy Ireland would like to thank all those who have contributed to the development of this important new resource, especially Maire White, Maria Keegan and Sinead Murphy for their invaluable input.

Contact DetailsWebsite: www.epilepsy.ieSocial Media: https://twitter.com/epilepsyireland; https://www.facebook.com/epilepsy.iePhone: 01 455 7500E mail: [email protected]

Not for Profit Organisations: Key to Supporting Self Management among People with Neurological Conditions

The Epilepsy Ireland toolkit is an example of not for profit organisations promoting and supporting self management among people with neurological conditions.

Self management is a person centred approach that is recognised internationally as key to meeting the growing challenge of long term conditions. It involves individuals and service providers working together to support a person in dealing with the very real implications of living the rest of their life with a chronic condition.

There is a considerable body of evidence pointing to the success of self management in promoting the wellbeing and independence of people with chronic conditions by enabling them to better manage aspects of their condition. Self management supports have been shown to result in the following outcomes:

-Improved quality of life -Improved confidence and self efficacy -Improved control over symptoms -Reduction in pain, anxiety and depression

Not for Profit Organisations: Researching and Developing Innovative Solutions

Providing people with the tools to manage aspects of their condition which are important to them, therefore, is crucial for people with neurological and other chronic conditions in improving their quality of life, independence and their ability to lead self directed lives in their communities.

There is good evidence that self management support helps to reduce the number of emergency hospital admissions and unscheduled use of GP services. However, recent research has advised a focus on evaluating self management as leading to a better use of health services, e.g. supporting people to proactively access their primary care team or specialist service or seek treatment at an earlier stage.

A recent survey of not for profit organisations carried out by the HSE found that 71% of these organisations identified themselves as providing self management supports. These services recognise the needs of the individual and family beyond the impact of a specific disability or illness to include a focus on independence and social inclusion.

Research into the effectiveness of self management initiatives has focused on the challenge of maintaining health behaviours over time. Not for profit organisations have a number of key strengths which make them ideally placed as a key partner in the delivery of self management supports:

They have a close relationship with the person with a chronic condition or disability, often remaining in 1. contact and working with them over a long period of timeThey have an insight into all the aspects of the person’s life in living with their condition as they take a 2. holistic approachThey can provide peer to peer contact and other supports that maintain and reinforce self management 3. thinking and behaviours over timeTheir work is informed and led by people with the condition4.

Not for profit organisations provide a vital link in what is often a bewildering array of specialist and general services for a person with a chronic illness or disability. In the case of neurological conditions, for example, individuals may see up to forty health professionals as part of their care. People with these conditions and their families receive a significant amount of information and advice over time. Not for profit organisations play a key bridging role, supporting individuals and their families to translate this information into effective self care.

The NAI, in partnership with the Disability Federation of Ireland, is working closely with its member organisations to promote and develop their role in supporting self management among people with neurological conditions. The NAI will also give a presentation on the key role of not for profit neurological organisations in supporting self management at the 10th anniversary European Patient Forum conference in Dublin in May, as part of the programme of events for European Month of the Brain.



Acquired Brain Injury Ireland is delighted to announce the commencement of Work4You!

Work4you is our exciting new vocational assessment service for people with an ABI and their employers in the Border, Midlands, and West region (BMW).The main aim of the project is to help people to retain their current job or to assist them to return to work, education or training after experiencing a brain injury.

The new service has been allocated over q1 million from the Department of Social Protection and the European Social Fund (ESF) under the Disability Activation Project (DACT). It is one of only 14 Irish projects to be successful in securing financial investment from this funding stream, until the end of April 2015.

In announcing the expansion of DACT, the Minister for Social Protection, Joan Burton, and TD said “These funds of €7million will be used to create linkages between employers and people with disabilities –this is crucial to ensuring that the untapped potential of people with disabilities is allowed to flourish and that they are enabled to participate fully in the labour market.”

Work4you will support people with an ABI aged 18 - 65 who are living in the BMW region and are currently in receipt of Sickness or Disability Welfare Payments. All applications will be validated by the Department of Social Protection.

BMW region is made up of counties Cavan, Donegal, Galway, Laois, Leitrim, Longford, Louth, Mayo, Monaghan, Offaly, Roscommon, and Sligo & Westmeath.

Work4you is a new vocational assessment service for individuals and employers affected by an ABI. It is the first community based neuro- assessment service of its kind in Ireland and will provide practical assistance and real hope for people with an ABI who are either struggling to hold on to their existing job or aiming to return to education, training, or employment. Funded until spring 2015 Work4you aims to:

Complete 540 vocational assessments •Complete 300 workplace assessments •Return 162 people to education, training or work•Sustain 48 people in education, work, or training 12months post project engagement •Provide ABI inform, education and training for employers/co-workers •Complete research and evaluation of service •

Key elements of the service are *Holistic Interviews* Vocational Criterion Work Sample assessments* Workplace assessments*Personal Progression Plans. Work4you participants, and in many cases their families, will be at the heart of the new service. They will be working to identify their own capacities, as well as areas of vocational challenge, in order to build on their vocational strengths. In addition they will be supported to build sustainable vocational bridges through developing community links and relationships.

Acquired Brain Injury Ireland: Work4you: Reaching out to people with acquired brain injury


Work4You Referrals People with an ABI may refer themselves to Work4you and we are working to raise awareness of Work4you so that families as well as state agencies, community organisations and employers will be aware of it and become strong referral sources. The application process will include an eligibility check, through the Department of Social Protection, coordinated by ABI Irelands referral contact in Dun Laoghaire. Once the regional Work4you teams have confirmation of eligibility they will start working with the perspective participant. In the event of someone not being eligible, or deciding not to take up a place on Work4you, the team will link them with appropriate community support or services.

Our Appreciation ABI Ireland would like to thank Pobal and members of the DACT assessment and management teams for their support of Work4you. We are also indebted to the staff and management of the NRH, in particular Catherine Logan in the Vocational Assessment Unit, for her belief in Work4you. We look forward to continuing to work with her and Edina O’Driscoll in the NRH’s Vocational Training Unit to ensure new opportunities are created for people with ABI in the community.

Work4You was officially launched in March 2013 and we wish each team all the very best over the next two years.

Contact DetailsWork4You Three Work4you hubs are located in counties Louth, Westmeath, and Mayo. The table below highlights each of these hubs together with their BMW region and list of counties each of the hubs supports. Contact can be made by emailing [email protected], by phoning 01-280 4164 ext 301, or at the contact numbers below.

BMW Region Work4YouHub Counties Supported

Border Castlebar & Ardee Donegal, Sligo, Leitrim, Cavan, Monaghan & Louth 041 6857918

West Castlebar Roscommon & Galway094 9026630

Midlands Mullingar Longford, Westmeath, Laois, Offaly044 9338773

Supporting the progression and retention of people with an acquired brain injury; specialists Acquired Brain Injury Ireland is providing a new vocational assessment service for individuals and employers affected by acquired brain injury (ABI).

Funded by the Department of Social Protection and the European Social Fund under the Disability Activation Project (DACT) the programme titled ‘Work4You’ is the first community based neuro- assessment service of its kind in Ireland and available in the BMW Region. Work4You will provide practical assistance to people with an ABI who are either struggling to hold on to their existing job, or aiming to return to work, education or training.

Pictured at the launch is Barbara O’ Connell, CEO ABI Ireland and Senior Occupational Therapists for the BMW Regions Elaine Butler, Maurice Harte and Mairead Bradley For more information see www.abiireland.ie or call 01 280 4164 Ext 310

Neuro-Rehabilitation

Organisation Gets Brain Injury

Survivors Back to Work


Over the past four years, the Alzheimer Society of Ireland (ASI) and the Irish Hospice Foundation (IHF) have supported a number of local research and development projects in the area of dementia and palliative care. Although these projects provided valuable insight into these clinical areas, they also identified the need to develop a broader understanding of the practice of dementia palliative care in Ireland. Therefore, the ASI and IHF engaged in a larger project which aimed to explore the palliative care needs of people with dementia and build a consensus for the dementia palliative care in Ireland. This process had not been done to date and was critically important in developing an understanding of the dementia

and palliative care landscapes currently existing in Ireland. The term ‘dementia palliative care’ was adopted to discuss the ways to meet the end-of-life care needs of people with dementia and their carers.

In 2012, the ASI and IHF completed this feasibility project which aimed to build a consensus on the national direction for good practice in dementia palliative care. This project adopted an exploratory approach and undertook a process of consultation with service providers and family members. The project aimed to adopt a lifecycle approach which reflected the full journey for people with dementia and to make recommendations which could be integrated into the existing health and social care structure. The final report “Building Consensus for the Future” identified key recommendations which were the foundations for developing a comprehensive programme for Dementia Palliative Care.

The Dementia Palliative Care (DPC) programme strongly prioritised the unmet needs of people with dementia and their carers. It acknowledged their challenges in accessing timely information and navigating through various health and social care settings. In response to these needs, the DPC programme developed key initiatives which aim to enhance the collaboration between care providers and to encourage staff to provide timely information which is tailored to the specific needs of the individual. The programme also highlighted the importance of staff initiating specific conversations in the early stage of the illness so people with dementia has an opportunity to take an active role in the discussions about their future care. The DPC programme also plans to fund some research projects to further explore the unmet palliative care needs of people with dementia and their carer.

The DPC programme also recognised that the needs of people with dementia and their families can be very complex and greatly vary over the duration of the illness. In order to address these needs, it is vital that people with dementia are provided with responsive services, which closely monitor and actively address their palliative care needs. Therefore, the DPC programme highlighted the need to strengthen the educational components of dementia palliative care in staff training so staff are skilled to apply the key principles of palliative care when working with people with dementia and their carers. Furthermore, it is vital that staff are skilled in addressing the key ethical issues and aspects of end of life care which specifically relate to dementia care. The DPC programme aims to be implemented over the forthcoming 12 months and is committed to providing a positive contribution to the delivery of dementia palliative care in Ireland.

Contact Details For more information in regards to any aspect of this article, please contact [email protected] tel. 016793188.“Building Consensus report” accessed at http://hospicefoundation.ie/wp-content/uploads/2012/12/Building-consensus-FINAL1.pdf

The Alzheimer Society of Ireland and the Irish Hospice Foundation: Partnership In Palliative Care

Join us for European Month of the Brain

Neuronetwork: Your online guide to the not for profit sector and neurological care

Ireland is uniquely reliant on not for profit organisations to provide a wide range of services and supports to people with neurological conditions and their families. These organisations also provide specialist information and training to health professionals and staff in a range of public services who come into contact with people with neurological conditions.

Neuronetwork is an online resource developed by the Neurological Alliance of Ireland in partnership with the Disability Federation of Ireland. The website is the ultimate guide to all the services provided by not for profit neurological organisations.

The website provides a one stop portal to all the services, events and publications produced by over 30 organisations.

Visitors to the site can easily and quickly search for information by -service type-neurological condition-geographical location

or a combination of all three. The search engine identifies the service closest to your geographical locationNeuronetwork is regularly updated by its constituent organisations.

Find out more by visiting www.neuronetwork.ie

You can view a full list of events for European Month of the Brain on our website at the link below

http://www.nai.ie/go/brain_awareness_week/events

We look forward to your support

The Neurological Alliance of Ireland would like to thank all its members who contributed to this publication and would like to take this opportunity to acknowledge the work of all those involved

in improving the lives of people with neurological conditions and their families in Ireland


Acquired Brain Injury Ireland

Alzheimer Society of Ireland

Aware

Epilepsy Ireland

Cheshire Ireland

Chronic Pain Ireland

Dystonia Ireland

Enable Ireland

Epilepsy Care Foundation

Headway

Huntington’s Disease Association of Ireland

Irish Heart Foundation

Irish Hospice Foundation

Irish Motor Neurone Disease Association

Meningitis Research Foundation

Migraine Association of Ireland

Move4Parkinsons

Multiple Sclerosis Society of Ireland

Muscular Dystrophy Ireland

Neurofibromatosis Association of Ireland

North West MS therapy centre

Parkinson’s Association of Ireland

Post Polio Support Group

Syringomyelia Support Group of Ireland

Spinal Injuries Ireland

Spina Bifida Hydrocephalus Ireland

The Rehab Group

Volunteer Stroke Scheme

Irish Society of Physicians in Geriatric Medicine

Myasthenia Gravis Association of Ireland

Progressive Supranuclear Palsy Association

Irish Institute of Clinical Neurosciences

Irish Association for Speech and Language Therapists

Member Groups of the Neurological Alliance of Ireland

Associate Members of the Neurological Alliance of Ireland

Documents

Not For Profit Organisations and Neurological Care …...Not For Profit Organisations and Neurological Care Impact and Innovation An NAI publication for European Month of the Brain,