If you would like to receive regular news via e­mail please let me know by sending a message to: nicole.vanschie@ pavs.org.uk or telephone 01437 771196 Newsletters are also available electronically at www.pavs.org.uk/ carers ___________________

We would like to hear from you if you wish any carer’s news to be included in the Carers Gazette. The next deadline is October 19, 2012. Please email articles with your pictures or send to: Carers Gazette PAVS Freepost SWC4881 36­38 High Street Haverfordwest SA612ZZ

Carers’ Gazette News for carers in Pembrokeshire

Issue 40 - August 2012

Contents Page: 3 A Day in the Life

of….. 7 Organisation News 12 Young Carers 13 Holidays 14 Carers Measure __________________

“Carers Day 2012” The 2012 Carers Day was held on the 19 th June at the Rugby Club in Haverfordwest. As always, we asked everyone who attended to complete an evaluation form so that we would know what had worked well, and where future events could be further improved.

Presentations The presentations and information stands were rated as ‘very good’ (63%) or ‘good’ (31%) by most. Some carers commented on how useful and informative the presentations had been, and the IT support was appreciated to ensure there were no technical hitches! We will make sure this is on­hand at the next event too.

Presenters on the day: Leonie Rayner, Ann Davies, Peter Llewellyn, Diane Price, Sue Blantern, Sarah Tomlinson, Jenny Gough

Page 2 Carers’ Gazette

Forum Session The discussions recorded in the forum sessions were around the theme of the Carers Measure and are covered in more detail in a separate article. It was suggested that forum sessions could be improved by grouping carers according to the nature of their caring role. In order to find out whether this will work better for carers, next time carers will be asked whether they’d like to be in a group with other carers in a similar situation­ so keep an eye out for this question on the registration form for the next event.

Information Stands/Consultations Carers found the Information stands to be ‘very good’ (57%), ‘good’ (30%) or ‘OK’ (13%) which is also reflected in the fact that 96% said they had made new contacts at the event. It was noted that due to the wealth of information available, the area was crowded. Some people also found that they didn’t have enough time to get all of the information they required. These comments will also be taken into account when choosing venues for future carer’s events.

Workshops The workshops available included a ‘Looking After Me’ taster session, a stress and anger management workshop, a Communities 2.0 computer session and health checks. The vast majority rated all of the above as ‘very good’. There was a comment that the therapy sessions were missed, having been an enjoyable part of previous events. This will be taken into account when planning future events

“Carers Day 2012” continued…..

The Event Overall

The majority of responses were very positive with 73% rating the day as a whole as ‘very good’ and another 21%

rating it as ‘good’.

The organisation and administration of the day was felt to be ‘good’ or ‘very good’ by everyone who provided feed­

back.

The lunch was generally scored as ‘good’, although there were

suggestions that less processed food would be nice in future.

Many carers commented that they had a ‘good…excellent…brilliant…top banana day!’ and had found it to be a good mix of carers and professionals.

_____________________

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Who do you care for? I am an older carer of 84 looking after my husband of 82 years old. He has diabetes which is affecting his feet causing mobility problems and he has high blood pressure too. After he broke his hip in 2005 it became apparent that my husband suffered from diabetes and that is when my caring role started seven years ago. I am now also doing the bills and administration; it has all come down to me gradually.

What is your usual daily routine? Care workers from Crossroads come in at 8.15 to get my husband up, wash and shave him to be at the table in his wheelchair for breakfast by 9 am. I put things out on the table the night before and make the tea etc in the morning when we have breakfast together. Thereafter it is time for the newspaper and the computer which he can access in his wheelchair. My husband is fascinated by any transport: canals, railways etc which he looks up on line.

I then go out to do the shopping or whatever needs doing. We don’t have a post office in the village, so I collect the newspaper every day together with the milk, bread and meat. The Fishguard market on Thursdays is a must for me to go to for social reasons.

A day in the life of Mary E. Brock Background Mary and her husband both grew up in the Midlands, their mothers met and that is how they got to know each other. This was in the wartime when Mary’s mother was a local leader of the WRVS and the co­ordinator in the village.

Mary went to boarding school and to the Agr i cu l tu ra l Co l l ege coming from a farming family. She worked in a milk testing laboratory in Yorkshire until she married in 1958 when she was 30 years old. They lived in Coventry where her husband worked for the Triumph motorcycles. Mary’s job involved getting up, at any time of the day or night to visit farms, so she had to give it up when she married.

Their two elder children (both boys) were born in Coventry and the third (a g i r l ) was born i n Croesgoch, where they moved when the motor industry wasn’t doing too well and they started a guesthouse here. Mary looked after the children and did voluntary work for over 30 years as a committee member for Relate (then Married Guidance) and with the WI.

Later in life Mary joined the Open University starting with a Foundation Course and then did an Arts degree in Humanities.

At 11.30 care workers come to take my husband to the bathroom and to do some exercises and walking with them to keep mobile as much as possible. After lunch we move to the lounge where I read to him every afternoon.

What support do you have? In total 2 care workers come in 4 times a day. If you realise how disabled my husband is you understand how my day is tied around him. I also have help in the house twice a week. If only we could get my husband into the car so we could go out together.

Initially we only had respite (also called replacement) care from Crossroads, but after an assessment by Social Services this support changed into replacement care and additional personal care. When I had a major operation myself in 2008, my husband went into a nursing home, which he hated.

I don’t go to a carers support group; I can’t escape and leave the house for very long. However Crossroads also provide respite twice a month so that I can meet with the Soroptomists for lunch and go to the Fishguard Bay hotel for “The Ladies Lunch”.

What has been your worst experience? My worst experience was that I didn’t know where to turn when I found I couldn’t cope when my husband needed more and more care after he broke his hip. There were problems with getting to the WC in time and with mobility; he needed exercise and a wheelchair to get about. How do you find out where to get the support? This is a major issue when you are retired and out of the regular swing! It is important that every doctor and every nurse point out where to go for help.

What has been most helpful? Originally finding Crossroads to help me in keeping in contact with friends I otherwise don’t see has been most helpful. I also find this newsletter useful, but thought it needed an example of an older carer caring for an older person.

What would you like to see changed to make it easier for carers? The Carers Emergency Card should be more widely promoted. Also it should be expected that every carer has respite and/or replacement care: a carer has to have a break now and then. Like me. I have to be there 24/7 to be sure that my husband is alright or if anything happens and I am tied to mealtimes. Editor’s note: A carer is entitled to a Carer’s Needs Assessment which is the way to get a break, Direct Payment will help to get replacement care that is agreeable to the carer and the cared for person.

What advice would you offer other carers? My advice is: go and find out what help you can get. I went to the Citizens Advice Bureau (CAB), which was a good start. Also ask at the doctor surgery, they know who is caring. Editor’s note: GP surgeries can forward your request for information to the Carers Development Worker at Pembrokeshire Association of Voluntary Services once you have completed the Carers Registration form.

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A day in the life of Mary E. Brock continued…………….

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A day in the life of Lin Martin Job Title: Service Development Manager, Crossroads Mid & West Wales ___________________________________________________________________________________________________________________

Background: I have worked in the voluntary sector in Wales for over 20 years, for organisations supporting brain­injured children, disabled adults and carers. When I first moved to Wales from SE England 28 years ago, I helped to manage my husband’s scaffolding business and worked for a building society, but I wanted to find something more rewarding to do.

While my three children were young, I was a volunteer for many years helping homeless and welfare rights groups in Kent and, after moving to West Wales, we were a host family providing holidays for inner­city children ­ I remember, in particular, two brothers from London who had never seen the sea before ­ so I knew that I would enjoy charitable work.

Sadly, my adult children have all moved away from the area and I now spend most of my spare time keeping up with my 6 lovely grandchildren but, when I can, I still enjoy badminton, reading, entertaining friends, live music and walking the dog.

What is your role? I have responsibility for securing the funding to resource the work of Crossroads Mid & West Wales – providing respite for carers, and personal care to the people they care for, throughout Pembrokeshire, Ceredigion and Powys.

There are 9 Crossroads schemes in Wales and, since April 2012, we have become partners of the Carers Trust – a new UK wide charity joining Princess Royal Trust for Carers together with Crossroads Care.

I work closely with our management team, Trus­ tees and carers, to develop new services and I ncrease the availability of our services across the region we cover.

Describe a typical working day? I work from home in Ceredigion, although at least half of my time is spent out and about in the three counties I cover, meeting with funders and building partnerships to help develop our services. I

f I am in the office I check and respond to emails first thing and then spend some time following up potential sources of funding – checking criteria, deadlines and contact details etc.

Carers’ Gazette Page 6

I always have a work list to get through and, depending on requirements at the time, will spend the rest of my day writing up appeals, completing funding applications to grant making Trusts or working on competitive tenders. Sometimes I will call a few carers, to get their views on any new proposals and ensure that I’m on the right track with any new ideas.

What is the best part of your job? It is always great when I get the letter or email telling me that a funding bid has been suc­ cessful, that all the hard work has paid off and more carers will be able to get the help they need. I love knowing that what I, and the rest of the Crossroads team do, can really make a difference and help to improve people’s lives. I always enjoy meeting with carers because the real stories they tell me are vitally important in bringing appeals to life and convincing funders to support our work.

How much of your time is spent working with carers issues? Crossroads Mid & West Wales is an organisation dedicated to providing services to help car­ ers, so everything I do is based around issues that are important to carers. Our organisa­ tion wants to see a world where the role and contribution of unpaid carers is recognised and all carers have access to the quality support and services they need to live their own lives.

What is the biggest problem you encounter? Raising money is never easy, and doubly difficult in a recession, so obviously the biggest prob­ lem I have is securing the funds we need to support as many carers as possible. Secondly, it’s very difficult to persuade funders to support the main work that we do, because every time they want something new and exciting. Fund givers want to support new projects rather then continue to support the existing ones.

If there were no carers, what impact would this have on your organisation? Without carers there would be no Crossroads Care, although the cost to society would be enormous. However, all the time there are people who cannot look after themselves without support, for whatever reason, there will be others who are willing to sacrifice their own time, money and freedom to help them stay at home and in the community they know.

What sort of support do you offer carers? Crossroads Mid & West Wales is an independent charity that provides short breaks to carers and personal care to people with care needs. Our core respite service gives carers time to themselves by providing a trained carer support worker who can come into the home for a period of time, to take over their caring responsibilities.

Crossroads services are available 24/7, 365 days of the year and are consistent and reliable. We work with people of all ages and our carer support workers build long and trusted relationships with the families they support. Some carers may want a regular weekly break, while others might just like an evening out with their partner once in a while whatever the need, we tailor the service to fit with each individual and, if funds are available, will do all we can to meet the demand.

From time­to­time we will have special short­term projects to help carers, such as our weekend breaks with care support at the Bluestone holiday centre, courtesy of the Big Lottery Fund, and we also provide group care for people with dementia, to give their carers regular respite while those they care for enjoy therapeutic activities and a change of scene.

A day in the life of Lin Martin continued…………………..

Carers’ Gazette Page 7

What changes would you like to see to benefit carers? It seems to me really unfair that those who have the least time and, very often the least money, have to spend twice as much of both, fighting the system to get the support they need.

Around 5 years ago, my husband developed a long­term medical condition, which means that he can no longer work, I have a grand­daughter who has Down’s Syndrome and is a wheelchair­user and my son has an autistic spectrum disorder, so I do have some personal understanding of carer’s needs and the problems around juggling work with care.

I would like to see a fully integrated health/social care/voluntary system that identifies carers as early as possible and offers them the information and support they need, as soon as they need it. All carers should have an annual health and home check, to see that they stay healthy and live in conditions that enable them to enjoy a life as stress free as possible.

Readers ­ Please note the correction of Nina’s telephone number: 01348 811463 which was previously printed incorrectly

NORTH CARER’S SUPPORT GROUP

This carer’s support group has recently been set up with support from Newport Surgery and Crymych Health Centre. The group has now agreed to meet from 10.30 till 12.30 every last Friday of the month, at Clynfyw in Abercych SA37 0HF, near Boncath. If you are living in the North of Pembrokeshire please feel free to join. For further details you can ring Nicole van Schie at PAVS on 01437 771196, Kathryn Charles at HDHB on 01437 771220 or for directions Jim Bowen at Clynfyw on 01239 841236. You can also get in touch with a carer from the support group: Nina Williams on 01348 811463 or email to nina@ninawilliams.plus.com

As you may be aware, Age Concern Pembrokeshire is a local and independent charity, supporting people aged 50+ to access its various services. We have recently obtained Lottery funding for the next 5 years for a West Wales Befriending Links service to break down isolation and loneliness by developing new Friendship groups in local communities to bring people together.

We are looking for volunteers to specifically train to deliver the LIFT programme to older people in local venues such as community and village halls, sheltered housing and to other appropriate groups. LIFT is a innovative programme offering older people the chance to take part in a series of low impact activities and games which they can do either standing or sitting. If you are interested in volunteering with the LIFT programme, (refreshments and lunch included) and ongoing commit to a minimum of 4 hours volunteering time per week – out of pocket expenses reimbursed, please contact Helen Bussell, Co­ordinator, Age Concern Pembrokeshire, 37 Merlins Hill, Haverfordwest, SA61 1PE. Tel: 01437 769972 / 07772 032363 / helen@acpembs.org.uk

Carers’ Gazette Page 8

'Singing for the Brain'

'Singing for the Brain' is designed to be a fun, stimulating and social activity for people in the early to moderate stages of dementia and their carers and family. Sessions are led by a trained ‘Singing for the Brain’ leader, consisting of a wide variety of music and include familiar favourites as well as simple songs that may enable harmonies or rounds. The gatherings are an opportunity for people with dementia and carers to meet regularly in a relaxing environment. All participants are able to join in as fully as they wish. ‘Singing for the brain’ particularly helps people who have language and communication difficulties, as well known songs often evoke verbal and emotional memories. This is organised by the Alzheimer’s Society in Pembrokeshire and taking place every first Monday of the month at Crundale Village Hall from 2 – 4 pm with refreshments provided.

Carer’s Information Programme The Carer’s Information Programme is going to take place in the Autumn at the Foundry House (21C) in Pembroke on Wednesdays: ­ 12 th Sept 1 ­ 4 pm Introduction to Dementia ­ 19 th Sept 1 ­ 4 pm Money and services ­ 26 th Sept 1 ­ 4 pm Challenging Behaviours ­ 10 th Oct 1 ­ 4 pm Crossroads / MAP ­ Advocacy ­ 17 th Oct 1 ­ 4 pm Occupational Therapist ­ Activities and Stimulation ­ 24 th Oct 1 ­ 4 pm Telecare systems, Transport, Pensions services

The course starts with an 'Introduction to Dementia' and then each week professionals come along to discuss dementia and behaviours generally, and various agencies come along to speak about their services and the help available locally. All are welcome to come along. Please ring the main office for more details or to express an interest, on 01646 692 329.

Memory Cafes The memory cafe group in the North of Pembrokeshire has moved to the Emlyn Arms in Newcastle Emlyn – every 1 st Thursday of the month from 2 till 4 pm. There is also a Saundersfoot memory cafe on the 1 st Wednesday of the month from 2 till 4 pm at the Saundersfoot Social Club. A Pembroke Carers group has started at The Foundry House (21C) in Pembroke on the 4 th Tuesday of every month from 2 till 4 pm. To contact: Katherine Clegg ­ Dementia Support Manager, Telephone 01646 692329 West Wales (Pembrokeshire) Cymdeithas Alzheimer's Society Suite 18, Cedar Court, Haven's Head Business Park Milford Haven SA73 3LS.

The Alzheimer’s Society is very grateful to LNG - South Hook for recent funding towards the above groups.

Page 9 Carers’ Gazette

Saturday Clubs

At Crossroads Mid and West Wales we are promoting our Saturday Club which runs in Wintern, Fishguard every other week and Portfield Activity Centre, Haverfordwest every week from 10 am until 4 pm. This allows carers a free day whilst their cared for is being well looked after. The club is available for clients who suffer with dementia, memory loss and related symptoms. There is a small

£5 fee for people attending to cover lunch. We currently have spaces in both our clubs. Sharon Houghton our Care Manager is available to come and talk to whoever needs more information. Please see poster below for details. To Contact: Rebecca Parry Admin Assistant, Telephone 01437 764 639 www.crossroads.org.uk

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DECISION MAKING AT THE END OF LIFE

At the end of life, most of us will have a period when we are too ill to make decisions. If you are the main carer for someone who cannot make decisions, you may think that you can make decisions in their place, but this is not the case. Carers do not necessarily have any right to make decisions for relatives, or even to receive any information about their condition. The legal position is that the healthcare team must make decisions on the patient’s behalf patient. They have a responsibility to find out from family what the patient would have wanted, but the decision rests with the professionals.

The Paul Sartori Foundation has received a grant to help people write Advance Care Plans (ACPs). This is a document (also known as a ‘Living Will’), in which people can put down their wishes and decisions, while they are well enough to do so. These documents can provide useful information for healthcare professionals and help carers make sure the patient’s views are known. In some circumstances, and if they are correctly written, ACPs can be legally binding. Writing an ACP can seem a time consuming and complicated process at first. The Paul Sartori scheme will train volunteers to help people write their ACP.

The Paul Sartori Foundation is a part of the ‘Dying Matters’ initiative to get people talking about end of life issues. The Dying Matters website is an excellent source of advice on a huge range of issues, including: • How to raise planning for the future with someone you are caring for • How to talk to someone who is facing death • How to talk to children about death • Will Writing • Funeral planning • Tissue donation • Writing an ACP

For more details please contact on sophie@paulsartori.org or 01437 763223 The Foundation is looking for people who might be interested in volunteering for this project and for people who want help to write an ACP. If you are interested, please contact Luke Conlon on luke@communitychoice.org.uk or 07904 864818.

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Mind Young Carers ‘Come dine with me’ cookery competition

Ten young carers recently entered the ‘Come dine with me’ style cookery competition at Mind, with the prize for the winners being a day out at Oakwood Theme Park. Young carers joined forces in groups of two to prepare a dinner and dessert and the whole activity was filmed including the scoring. Now we are in the process of making a film of the event, which will be equally as funny as the popular TV show!! This activity combined fun with healthy eating and the young carers love of cookery. Some of the delicious food that was served included spaghetti bolognese; apple crumble, home­made burgers, wraps, pizza, peach crumble and stir fry fruit. The competition participants organised all their menus naturally around healthy eating and all the food smelled and looked delicious. Tables were laid, knifes and forks were placed, in some cases they asked for champagne flutes, candlesticks and napkins to be present! The outright winners were Amy and Kylie. Well done to you both.

Dancers enter local dance competition The Mind young dancers attended their first dance competition in Pembroke Dock recently. We got there early so that they would have the time to get ready with the professional dance make up and face gems that we purchased. All 5 girls came away with trophies (meaning they came in the top 6 in the competitions entered). We are very proud to announce a first for one of our dancers (Kylie) and Amy had four trophies to her name. In all the girls walked away with 12 trophies and cups between them. They admitted to being very nervous before the competition but elated at their achievements at the end. Next the dance exams were held in July. The dancers were entered at silver level instead of bronze! Well done girls we are all very proud of you at Pembrokeshire Mind.

Carers’ Gazette Page 12

DIARY MARKER 18 th September 2012 A CHANCE FOR YOU TO HAVE YOUR SAY ON IMPORTANT CONSULTATIONS – FOR

UNPAID CARERS AND VOLUNTARY ORGANISATIONS

Hywel Dda Health Board are currently conducting a number of significant consultations, which PAVS will be responding to with your input. Out for consultation at present are:­ • The Carers Strategies (Wales) Measure 2010, draft Strategy for the Hywel

Dda area – setting out Hywel Dda’s responsibilities in terms of giving information to and consulting with unpaid carers

• ‘Your Health; Your Future – consulting our communities’ – Hywel Dda’s Clinical Services Strategy, which sets out the changes they propose to make to the way that health services are currently delivered within the 3 Counties

PAVS will be running a consultation event on 18 th September 2012 at Letterston Memorial Hall and we would like to invite you to attend on the day to share your views. The morning will be spent looking at the Carers Measure Strategy, with a representative from Hywel Dda presenting the document, and a chance for discussion afterwards. In the afternoon we will have other representatives from Hywel Dda presenting their Clinical Services Strategy and then we will break into discussion groups. If you are interested in attending either of the sessions, or for the day, please contact Michelle Copeman at PAVS on 01437 769422 or email michelle.copeman@pavs.org.uk We are able to support carers with reimbursement of travel or care costs (someone to be there to replace you) to attend the event. If you need this help please let us know.

Positive Health News

A carer wrote to me on Thursday 19/07/2012: I returned home from the recent Carer’s Day to find my husband not well. My friend and neighbour called our GP who arrived promptly. She was concerned about him and wanted to admit him to hospital which we didn’t really want. She gave us advice and told us to ring straight away if there was any change, and to ring 999 during the night. At about 9 pm the bedroom door opened and there was the Doctor! She had called in because she was so concerned. My husband had to be admitted to hospital, and she even telephoned me while he was there to find out how he was. I have never experienced this before and it was a great comfort to know that there was someone who genuinely cared!

From another carer we received this news recently: Last August our son Richard fell and broke the neck of his right femur. He is 36 years old, is registered blind from birth and diagnosed with ASD. He lives at a registered care home in Pembroke Dock and we, his parents, have worked extremely closely with the NHS, his funding authority (Buckinghamshire CC) and his care home providers to ensure that he receives the necessary treatment and rehabilitation. He continues to recover and to regain his mobility but, as was the case before the accident, he is entirely dependent on others for appropriate

care. As you can imagine, it has been a struggle for all involved but, despite the trauma for Richard, there is a 'Good News' element to the treatment that he has received.

Carers’ Gazette Page 13

HYWEL DDA HEALTH BOARD Summer 2012 Carers Strategies (Wales) Measure 2010

The Carers Strategies (Wales) Measure was passed by the National Assembly for Wales on 21 September 2010 and approved by Her Majesty in Council on 10 November 2010. The Regulations for the measure came into force on 1 st Jan 2012.

What does it mean? The new law means that Local Health Boards (LHB) and Local Authorities must work together to prepare and publish an Information and Consultation Strategy. The Strategy will set out how they will work together to provide information to carers and include carers in the arrangements made for those they care for. This is the first legal duty that LHBs in Wales have been given to provide services to carers. The Regulations require draft strategies to be submitted for approval by the Welsh Government by October 2012.

Health Board responsibility: Local Health Boards are expected to take the lead on developing the Strategy and putting it into practice. This will require effective leadership and management, particularly at senior levels, to make sure all staff are trained to:

• Identify carers at the earliest opportunity & give them the information they need • Tell carers that they may have a right to a needs assessment • Signpost carers to sources of advice and support

Where are we now? A three counties Strategy Group reporting to the newly established Programme Board has been meeting regularly to implement the Carers Measure. The group, chaired by the Health Board’s Assistant Director of Strategic Partnerships includes membership from each Health Board County Team including Mental Health and a representative from each Local Authority in the form of their Carers Lead Officers and each County Voluntary Council. The Terms of Reference for this group can be found on the Hywel Dda Health Board intranet site (www.howis.wales.nhs.uk;). The group’s role is to monitor progress with the following specific work­streams established and in their last meeting highlighted the need to carry out specific work in relation to Young Carers:

Information / Investors in Carers Group The work of this group is to standardise the current information available to Carers in various settings while it also focuses on maintaining the Investors in Carers scheme. Among the actions agreed at the meeting held on the 27 th June 2012 the further development of the Investors in Carers scheme to all GP practices and its extension into Secondary Care where six pilot sites have been identified. In terms of information a baseline assessment of the current information available to Carers has been undertaken in order to compare with the requirement of the Measure.

(Continues on next page)

Carers’ Gazette Page 14

Carers Training Group In dealing with both staff and carers training this group has concentrated its efforts on commissioning an E­learning programme to raise staff awareness relating to identifying carers. In terms of practical Carers training, discussions are underway with the third sector over the opportunities to take this work forward.

The group is led by the Health Board’s Assistant Director of Workforce and OD (Leadership, Education & Development) and considerable work has been undertaken to establish the current training available to Carers and highlighting the benefits of the Education Patient Programme for Patients who provide specific “Looking After Me” courses aimed at Carers.

Consultation Work Stream There are two key areas being taken forward within this work­stream, firstly taking on board Carers’ views on any service change. This work has been led by the Head of Public and Patient Engagement at the Health Board who has been working closely with members of the three counties Carers Strategy Group. Secondly there is a great emphasis on the effective consultation with Carers in relation to the condition of the cared for and that all consent and information sharing issues are addressed. This work is being led by the Health Board’s Assistant Director of Nursing (Workforce and Modernisation) and a further update on this group’s work will feature in a future Carers Measure Briefing.

Young Carers A workshop was held on the 4 th July to highlight the Carers Measure requirements to meet the needs of Young Carers. A summary of this workshop will be included in the next Carers Measure briefing.

Hywel Dda Carers Measure Programme Board This Board met for the first time on the 13 th June and is chaired by the Health Board Chairman who is also the Carer’s Champion for the Health Board. The Board is made up of Senior Personnel from each Local Authority and their designated Carer’s Champions.

Next Steps Work is underway to draft the Carers Information and Consultation Strategy in order that it can be formally submitted to the Welsh Government by the end of October 2012. The final draft of the Strategy has been considered at the Carers Programme Board on the 25 th July after which is a period of engagement, when further views and comments are gathered from key stakeholders across the region. This process includes specific Carer Forums held in each county utilising the current Carer network arrangements that exist.

Peter Llewellyn Assistant Director of Strategic Partnerships Hywel Dda Health Board peter.llewellyn@wales.nhs.uk;

Page 15 Carers’ Gazette

Carers Day Forum: 19/06/2012 Carers Measure Consultation Questions

At the Carers Day forum we asked Carers and other professionals for their views on information, consultation and training in light of the current work being undertaken by the Local Health Board and partner Local Authorities to produce a Carers Information and Consultation Strategy as required under the Carers Measure. The questions posed and a summary of the responses given are presented below. This work will help to inform the draft strategy so many thanks to everyone for their valuable contributions.

“It is recognised that Carers who are given information on their rights and on avenues of support early on in their caring role feel better equipped to cope with the pressures of caring” (from the Carers Measure Guidance).

Do you agree with this statement? There were mixed responses to this question, very dependent on the personal experiences of the carers involved.

Where do you think Carers Information Packs should be available to make sure that Carers get this information at the earliest opportunity? Most supported the idea of packs being available in a wide range of Health and community settings, including but not limited to: PAVS, GP surgeries, supermarkets, libraries, dentists, opticians, village halls, CAB, post offices, colleges, leisure centres, Internet, churches, youth clubs, hospitals, and schools.

Do you feel that you received enough information and at the right time to support you in your caring role? If not, is there any other information you think would help you? The majority of respondents did not feel they were provided with information early enough and some felt they did not receive enough information. It was felt that there needed to be clearer pathways to services with proactive signposting by Health professionals. Some felt it that more information to help carers to identify themselves as carers as a first step to receiving support would be useful.

How do you prefer to access information? The most common response to this question was that ‘face to face is best’, and that in this way information is targeted and not overwhelming. Service providers and professionals felt the format of information given should be in whichever way is required by the individual. The provision of information online had mixed responses: some don’t have Internet access at all, while several make good use of forums and websites for their information needs. Others prefer written information in the form of leaflets or books.

“Organisations should maintain an effective, formal dialogue with local Carers to ensure that the Strategy is fully developed, working effectively and providing Carers with the information they need” (from the Carers Measure Guidance).

How do you think we should get carers involved in the development and implementation of this Strategy? What consultation methods? As with many things, a ‘one size fits all’ approach will not work for everyone. Forum events were felt by many to be a good way of involving carers, and various carers preferred the idea of being involved in a face­to­face session to completing a questionnaire. Some felt that the best way to get carers involved was to go to existing carers groups, while recognising that this may exclude carers that are not already attending a group. It was also suggested that carers could be consulted with through the ‘Talking Health’ programme. Whatever methods are used must be accessible and free of unnecessary jargon.

This newsletter is available on our website too at: www.pavs.org.uk/carers. If you would like to have this free quarterly newsletter for carers sent to you, please forward your details to Carers Gazette, PAVS, FREEPOST SWC4881, 36­38 High Street, Haverfordwest, SA61 2ZZ email: Nicole.vanschie@pavs.org.uk or ring 01437 771196.

Name ……………………………..………………………………………………… Carer: Yes / No Email…………………….……………………………………………………………………...

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Age Group: 0­20 21­30 31­40 41­50 51­60 61­70 71­80 81+

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Carers’ Gazette Page 16

Would you be interested in helping us with the development or delivery of Carer Awareness training for NHS and Local Authority staff, and if so, how? The majority of respondents were interested in helping to develop staff Carer Awareness training, despite concerns about where they would find the time to commit to this. Some were surprised that this was not already part of core training for staff with others acknowledging that more training is required. A few carers were willing to contribute their own experiences, either in person or recorded. Other carers would be interested in being part of a focus group to look at course materials and check whether they are suitable.

If you would like to be involved in the development of the Strategy or training, what can we do to make the process work for you? Meetings or training would need to take place at different times, on different days and in different locations to allow carers a choice in when they attend. Carers would need as much notice as possible in order to make arrangements, and some would need financial support to arrange replacement care or transport to attend. Refreshments would be appreciated as well as for carers to have a key role in setting the agenda for these meetings.

Have you ever been given any training to help you with your caring role? Carers report having attended a variety of training courses to help with caring including: life support training, moving and handling, mental health, autism, first aid and sign language. Many others identified a need for more training in areas including: condition specific training, manual handling and managing challenging behaviour. Some had found that the training they need is available for professionals but they can’t access it as carers. Other restrictions to accessing training included the cost, replacement care, and the availability of training.