HEALTH FACILITATIONHEALTH ACTION PLANNINGFROM POLICY TO PRACTICEWORKING WITH CARERS

Mark BradleyHealth Facilitation Co-ordinator

Topics covered:• ‘Why we are here?’ – an

overview of the current policy etc.

• The Pattern of ill-health in people with LD.

• Health action planning and Health Facilitation – Best Practice.

• Using Personal Health Profiles

• Comprehensive and effective health checks

• Working with Primary Care and Acute Hospital Services.

• What the Future holds?

• A number of recent reports highlight the inequalities in health care experienced by people with learning disabilities; in terms of health outcome and their experience of mainstream NHS services.

• Clear recommendations have been made to address these inequalities...

Why are we here?

• Key ‘HEALTH’ actions were:• To reduce health inequalities• Health Facilitators for everyone

with LD by Spring 2003• GP registration for everyone by

2004• Health Action Plans for

everyone with LD by 2005• None of the above happened...

Valuing People (2001)Did anything happen re: health?

• Findings identified health inequalities:

• Poorer general health in LD.• Good mainstream NHS services

‘patchy’ at best.• Lack of effective NHS Systems

to manage LD health needs• Over 30 recommendations

made to the DH – including health checks.

Disability Rights Commission (2006) – Equal Treatment: Closing the Gap

• Set up ‘Promoting Equality Steering Group’ now the ‘Valuing People Now Health Steering Group’

• Upheld most of the recommendations.

• Health Checks for people with LD one of the more pressing issues.

DH response to the DRC report ‘Promoting Equality’ (2007)

• Mencap report highlighting NHS ‘Indifference’ relating to the deaths of 6 people with LD.

• Called for a public and independent inquiry.

• Asked for Annual Health Checks for people with LD (referring to ‘Treat Me Right’ – 2004).

• Asked for a confidential inquiry into premature deaths (mentioned in VP 2001 – not achieved)

Death By Indifference (2007)

• Secretary of State for Health commissioned an ‘Independent Inquiry into Access to Healthcare for People with LD’ led by Sir Jonathan Michaels.

• He made 10 recommendations.• ‘There is evidence of a significant level

of avoidable suffering and a high likelihood that there are deaths occurring which could be avoided.’

• 1 recommendation was for a Directed Enhanced Service for Health Checks

Healthcare for All (2008)

• The DH in negotiation with NHS Employers and the BMA, agreed to include Annual Health Checks for Adults with LD in their Directed Enhanced Service 2008 – 2010.

• This scheme has been continued into 2011.

• It calls for greater joint working arrangements between social care, specialist services and primary care.

Directed Enhanced Service (2008)

• Published in Jan 09.• This DH 3 year strategy upholds

the 10 recommendations in Healthcare for All.

• ‘Health’ is one of the main priorities.

• Public Health Observatory commenced = better data on LD.

• Key reference made to annual health checks.

Valuing People Now (2009)

• Published in March 09.• This good practice guidance

builds on the DH response to the DRC report and Michael’s inquiry.

• It describes what ‘Good Health Facilitation looks like’

• Again, it refers to the importance of comprehensive health checks and everyone’s role in health action planning.

Health Facilitation and Health Action Planning (2009)

• Published in March 09.

• ‘Our investigation reports illustrate some significant and distressing failures in service across both health and social care, leading to situations in which people with learning disabilities experienced prolonged suffering and inappropriate care.’

Six Lives: NHS Ombudsman Public Inquiry (2009)

• ‘all NHS and social care organisations in England should review urgently:

• the effectiveness of the systems they have in place to enable them to understand and plan to meet the full range of needs of people with learning disabilities in their areas; &

• the capacity and capability of the services they provide and/or commission for their local populations to meet the additional and often complex needs of people with learning disabilities;

• And should report accordingly to those responsible for the governance of those organisations within 12 months of the publication of this report.’

Six Lives: NHS Ombudsman Public Inquiry (2009)

• What is clear from the reports is that:

• Despite some good ‘patchy’ practice…

• We do not work well enough together to truly assess, identify and systematically record the health needs of our local learning disabled population.

• This needs to be done… now.

So what now?

• Health Checks are widely recommended.

• Is everyone completely clear about what a comprehensive health check is?

• Does everyone know about or understand the system for recording information gathered in health checks?

• If not….?• What steps do we need to take?

Health Checks…

HEALTH QUIZ!The following slides have been put together, mainly for primary care staff to consider the different pattern of ill-health in the LD population.

For carers, it is useful to remind ourselves of what the reasons are for developing a system of organised health checks.

So…. what are these differences?

Learning Disability Health Quiz

7 19 52 73

21.6 46 9 22

4 100 58 10.3

People with LD are ??? times more likely to die before the age of 50:

Learning Disability Health Quiz

7 19 52 73

21.6 46 9 22

4 100 58 10.3

15% - 17% of the general population die of respiratory diseases. What is the percentage range in people with learning disabilities?

Learning Disability Health Quiz

7 19 52 73

21.6 46 9 22

4 100 58 10.3

1% of the general population have epilepsy. What % of people with LD have epilepsy?

Learning Disability Health Quiz

7 19 52 73

21.6 46 9 22

4 100 58 10.3

You are (??) times more likely to die from something that could have been avoided if you have a learning disability?

Learning Disability Health Quiz

7 19 52 73

21.6 46 9 22

4 100 58 10.3

The % of people with dementia (65+) is 5.7% (Gen pop). What is the percentage for adults (65+) with LD?

Learning Disability Health Quiz

7 19 52 73

21.6 46 9 22

4 100 58 10.3

In the general population 77% of women have cervical smear tests, for women with learning disabilities the percentage is?

How did you do?

The following slides provide more information relating to the different pattern of ill-health in

LD when compared to the general population

26% of people with LD are admitted to general hospitals each year compared to 14% of

the general population

These are unacceptable health inequalities

It’s about Safety!• National Patient Safety

Agency Report 2004

• ‘’People with learning disabilities are more at risk of things going wrong than the general population, leading to varying degrees of harm being caused while in hospital “. (Especially for those with higher support needs)

Health Issues in LD• Mortality – People with learning disabilities are

58 times more likely to die before the age of 50

• Cancer – The pattern of cancer is different in LD with lower rates of lung, prostate, and urinary tract cancers, and higher rates of oesophageal, stomach, and gall bladder cancer and leukaemia.

• Helicobacter Pylori Infection: endemic in LD population – postulated that high prevalence of this infection leads to a higher prevalence of gastric carcinoma.

Health Issues in LD

• Respiratory Disease – Most common cause of death – rates 3 times higher than general population at 46 – 52%.

• CHD – 2nd most common cause of death in LD - nearly 50% of people with Down’s Syndrome have congenital heart defects.

• Sensory Impairments – Common visual impairments and 40% hearing Impaired.

• Epilepsy – At 22% of the LD population it’s over 20 times more common than in the general population (=1%)

• SUDEP (Sudden Unexplained death in epilepsy) – 5 times more common in LD than in others with epilepsy

Health Issues in LD• Dementia – rates 4 times greater and early

onset in Down’s Syndrome• Thyroid Function – Greater risk of

hypothyroidism• Mental Health – Schizophrenia is 3 times more

common• Osteoporosis – substantially less bone density• Importance of Postural Care!!!

• See: www.posturalcareskills.com

Gastro oesophageal reflux disease ~ 48% of people with LD with IQ below 50 as a result of poor gastric motility. 10 times rate in normal population.

Predisposing factors cerebral palsy,scoliosis, severe/profound LD andanticonvulsants

Frequently goes undiagnosed due todifficulties in reporting symptoms and pain

“Swallowing difficulties are more common in people with learning disabilities. If not managed safely they can lead to respiratory tract infections, a leading cause of early death”.

•Poor nutrition and hydration

•Carers lack of awareness of the symptoms of aspiration

•Problems of implementing health guidelines in social care settings

National Patient Safety Agency Report:

“Understanding the patient safety issues for people with learning disabilities”

(2004)

36% of individuals in long-stay hospital had chewing and/or swallowing problemsHickman J (1997): ALD and Dysphagia: issues and practice. Speech and Language Therapy in Practice Autumn:8-11

Del Giudice E, Staiano A, Capano G, Romano A, Florimonte L, Miele E, Ciarla C, Campanozzi A and Crisanti A F (1999): Gastrointestinal manifestations in children with cerebral palsy. Brain & Development Jul;21(5):307-11

Sheppard J J (2002): Swallowing and feeding in older people with lifelong disability. Advances in Speech Language Pathology Sept; 4( 2):119-21

60% people with Cerebral Palsy have difficulties with chewing and/or swallowing

People with CP show a deterioration in oral motor skills and dysphagia in their early 30’s

PEOPLE WITH LEARNING DISABILITIES

As many as a quarter of the

respiratory disease deaths of

PLD can be directly linked to

aspiration pneumonia

Community Services Commission (2001): Disability, death and the responsibility of care. Sydney: New South Wales Community Services Commission

COFFEEBREAK20mins

Health Facilitation, Health Checks and

Personal Health Profiles – but

first…

Bexley Care Trust• Total Population = 226,382 (Bexley

Care Trust – March 2010)• Expected LD population based on

national stats (1.8 - 3%) = from 4,074 - 6,791 pwld (including children)

• QOF population 18+ = 495 (Nov 09) • Bexley LDT register = 723 using

specialist LD services• Bexley Mild LD list included = 64• Some in out of borough placements

Greenwich • Total Population = 267,000 (Annual

Report 07/08)• Expected LD population based on

national stats (2-3%) = from 5,340 to 8,010pwld (including children)

• Current Qof figures = 545 (Nov 09)• Greenwich LDT register = 806 using

specialist LD services• Some in out of borough placements

The Health Checks - DES requirements:The pre-requisites for taking part in

the DES are as follows:

1. Practices will liaise with the local LD team to identify their patients with LD

Practices will attend multi-professional training

Practices will include patients identified bythis liaison in a ‘Health Check Register’

Practices will keep this registerup to date (in addition to theexisting LD QOF registers)and ensure all those on thehealth check register areincluded on the QOF register

Practice will provide an annualhealth check (in line with DESguidance) for those on the HCregister only.

Liaising with Primary Care:• You can see some of the issues in

identifying people with learning disabilities.

• For carers in Greenwich it is worth asking your local GP practice about health checks for people with learning disabilities.

• Some GPs need to update their registers. Improvements with their LD information are being made.

Health Action PlanningThe DES states that:• ‘health checks should integrate with the

patient’s ‘personal health record’ and ‘health action plan’

• The Department of Health has issued guidance on Health Action Planning and Health Facilitation (March 2009)

• We have introduced ‘Personal Health Profiles’ or PHPs in line with the DH and DES guidance re: Health Action Plans and Personal Health Records.

Health Action PlanningA health action plan (HAP) details:• ‘the actions needed to maintain

and improve the health of an individual and any help needed to accomplish these. It is a mechanism to link the range of services and supports they need, if they are to have better health…… The plan is primarily for the person with learning disabilities and is usually co-produced with them.’

Health Action Plans (HAPs)• Will be offered/reviewed at:• Transition from secondary education with a

process for ongoing referral;• Leaving home to move into a residential

service;• Moving home from one provider to another;• Moving to an out of area placement;• Changes in health status, for example as a

result of a period of out-patient care or in-patient treatment;

• On retirement; - When planning transition for those living with older family carers.

Health FacilitationHealth Facilitation is described as;

‘the process of enabling people to understand health issues and to access mainstream health services’.

(Bernal 2006)

The DH divide this into 2 levels:Level 1 = Service development work, informing, planning and commissioningLevel 2 = Person to person work with people with learning disabilities

Health Checks and Health Facilitation• The aim is that Health Checks will be

the 1st point of contact for the Health Action Plan (HAP) and Personal Health Profile.

• Carers or those offering 1:1 support in Wadeville will be the ‘Health Facilitator’.

• It is their role to support the maintenance of the HAP.

Health Checks for People with LD - DVD• We recently commissioned a short

film about Annual Health Checks.• The film is produced by people with

learning disabilities with support from a local Day Service.

• It explains the use of Personal Health Profiles and Health Action Plans (This model is in line with DES Requirements) – Copies are available.

Play DVD…

Oxleas Resources – Screen Shot

Click here for the health check invitation letter

Completing Health Checks – A Primary care perspective 1. Health checks begin once the health

check register has been validated.

2. Practices invite patients on the health check register.

3. Invitation letters are available on the Oxleas website

4. Attach the pre-health check questionnaire

Completing Health Checks

5. Practices will be provided with Personal Health Profiles for everyone on their HC register.

6. Practices complete the health check (observing patient’s consent and best interests) using the guideline provided and introduce the patient to the personal health profile. A copy of the DVD will be made available to each practice.

The Health Check: GP Practice staff are required to complete the following: 03/12/09 150/90

Fill in this page…

03/12/09

03/12/09

03/12/09 120Kgs

92

7.2

The Health Check: GP Practice staff are required to complete the following: 03/12/09 Dr

JonesGP

Completed Annual Health Check

Fill in this part…

Tick box if health need

requires action!

Joe Bloggs 3rd Dec 09

To visitDentistFor CheckUp

Joe with Help frommum

Yes: Page43

Dec 2010

How Carers can help:

• Your support is needed in maintaining each person’s PHP.

• This means populating all of the relevant sections of the book & completing the pre-health check questionnaire!!

• Adhering to any identified health need/action.

• Ensuring the PHP is taken to all health related appts – acute, primary care and specialist health appts.

Reasons for annual health checks• Provides an opportunity to ensure health

needs are identified and met by the most appropriate service (referring if necessary).

• Provides an opportunity to check & review patient’s Health Action Plans.

• Provides an opportunity to offer health promotion advice.

• Provides an opportunity to build relationships & desensitise any fears.

Other initiatives…

• Health Facilitation is about access to all health services.

• We are developing our work with South London Health Care NHS Trust.

• Consider the Traffic Light Assessment for vulnerable people you support.

• We have also developed a DVD in QEH hospital…

DiagnosticOvershadowing,The Disability Discrimination Act & Consent

Diagnostic Overshadowing• Described as: The presenting symptoms put down

to the ‘learning disability’, rather than seeking another, potentially treatable cause.

• When a person presents with a new behaviour or existing ones escalate, you should consider:

• Physical problems - pain or discomfort, e.g. from ear infection, toothache, constipation, reflux oesophagitis, deterioration in vision or hearing.

• Psychiatric causes - depression, anxiety, psychosis, dementia.

• Social cause - change in carers, bereavement or abuse.

Equality Act 2010

• The same service does not = same health outcome.

• Legal requirement not to treat disabled people less favourably.

• Legal requirement to make reasonable adjustments.

• To bring about equality it can be necessary to treat some people differently.

• Reasonable adjustments are often about practices and procedures rather than physical access, and often cost nothing.

ConsentThe Mental Capacity Act (2005):5 Key Principles:

1. Presumption of capacity

2. Empowering person to take decisions

3. Taking unwise decisions

4. Acting in best interests

5. Least restrictive course of actionConsider MCA best practice guidance & IMCA services

What you can do – moving forward:• Have a brief discussion

about practical ways to move forward with HAPs.

• What support do you think you’ll need?

• What do you think will work well?

• What do you think the difficulties will be?

How canI help?

Thank You• For further support and

information on learning disabilities and Health Checks, please contact Mark.bradley@oxleas.nhs.uk

• 0208 269 3349• Further resource and contact

information is available: www.oxleas.nhs.uk

Acknowledgements• To the following people/organisations that have supported the development of this

training pack and associated materials:• Laura Summers – Leicester PCT• Stephan Brusch – NHS Westminster• Natalie Winterton – Brighton & Hove PCT• Daniel Marsden - East Kent Hospitals Trust• Dr Tom Howesman• Cornwall Partnership Trust• Portsmouth City Teaching PCT• Health & Social Care Colleagues from Bexley, Bromley and Greenwich• Respect in Bexley• Bexley and Bromley Advocacy• Maz Marsham – Lead Nurse, Bromley CLDT

www.easyhealth.org.uk

Thank you,Mark BradleyHealth Facilitation Co-ordinatorOxleas NHS Foundation Trust