meeting primary care needs for people with learning disabilities directed enhanced services (des)...

Meeting Primary Care Needs for People with Learning Disabilities

Directed Enhanced Services (DES) – Learning Disabilities

2013

Joanne Brown

Professional Support & Practice Development Nurse (LD)

Why are we here?• Valuing People – DoH (2001)• Treat Me Right – Mencap (2004)• Death by Indifference – Mencap (2007)• Healthcare for All – Independent Inquiry by J Michael,

DoH (2008)• Valuing People Now– DoH (2009)• Six Lives: the provision of public services to people

learning disabilities (2009)• Equal Treatment, Closing the Gap – Disability Rights

Commission (2009)• Death by Indifference, 74 deaths and Counting –

Mencap (2012)• Health Inequalities & People with Learning Disabilities

in the UK:2012 – Improving Health and Lives, Learning Disabilities Observatory.

• Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) – (2013)

What today’s training will include:• Understanding of

learning disabilities & associated health needs

• Barriers faced by people with learning disabilities

• Identification of people with learning disabilities and clinical coding

• Health action planning and Health Facilitation

• Experiences and expectations of pwld

• Comprehensive and effective health checks

• Communication and learning disability

• Consent, Mental Capacity Act, Disability Duty & the Law

• Working together

What is a Learning Disability?The Dept of Health defines Learning

Disability as:-• A significantly reduced ability to

understand new or complex information (impaired intelligence with an IQ below 70) with:-– A reduced ability to cope

independently– Problems starts before adulthood

What is NOT a learning disability BUT a learning difficulty.• Difficulty reading, writing and numeracy• Emotional difficulties which disrupt schooling,

influencing achievement• Attention deficit hyperactivity disorder• Asperger’s syndrome and some individuals

with autism • May have borderline learning disability• Vulnerable?

Prevalence World Health Organisation (WHO,

1992) ICD-10

• Mild IQ 50-70• Moderate IQ 35-49Approx 1.2 million people in UK

• Severe IQ 20-34• Profound IQ <20Approx 210,000 people in UK

Mild Learning Disability

• will be able to hold conversation

• will be independent in self care

• basic or limited reading and writing skills

• able to maintain social relationships and employment.

For this group, primary care teams will provide much of their health care with little

need for specialist team intervention

Moderate Learning Disability• Enjoy a level of independence requiring additional support in some aspects of life, likely to require support with health needs

Severe or Profound Learning Disability

• Very limited or specialised communication skills

• Additional physical & mobility problems

Require a greater level of support in most or all aspects of life including identifying health related problems

Health IssuesMore likely to:

• Die early – for men this is 65 years and women 63

• Die from respiration problems as an immediate cause of death

• Have underlying heart problems

• Have higher rates of gastro-intestinal cancers

• Be under/overweight, and eat a poor diet

• Have epilepsy• Have thyroid dysfunction• Have dental problems.

Health IssuesMore likely to:

• Have dementia – esp people with Down’s Syndrome

• Have a physical disability• In the UK it is estimated

that 50,000 have a visual impairment + 15,000 are blind.

• Approx 40% are reported to have a hearing impairment

• Use medical hospital services

• Be discharged quickly

Health IssuesLess likely to:

• Have a health check at GP’s

• Be screened for cancer • Use surgical hospital

services• Have sight tested• Have hearing tested• Receive pain relief• Get Health Promotion

advice• Be included in

consultations/ patient forums

Diagnostic overshadowing

• ‘Diagnostic overshadowing’ is the term used by the Disability Rights Commission to describe the tendency to attribute symptoms and behaviour associated with illness to the learning disability, and for the illness to be overlooked.

Healthcare for All (2008)• The presenting systems are put down to the LD, 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/discomfort

• Ear infections/toothache/reflux/constipation

– Psychiatric causes – depression/anxiety/psychosis/dementia

– Social causes – change in carers/bereavement/abuse

Barriers to health careCOMMUNICATION:

• Abbreviations/jargon• Difficulties with reading and writing• Information not accessible• None or limited verbal communication• Different methods of communicating

Barriers to health carePHYSICAL:

• Examinations• Equipment• Reliance on additional support from

carers• Transport/parking• Cognitive ability• Sensory impairments

Barriers to health careEmotional:

• Alien world! unfamiliar• Don’t understand what is happening• Difficulty with waiting for long periods of

time• Difficulties with being around lots of

people• Difficulties with noise• Frightened of procedures • Bad past experiences

Barriers to healthcareChallenging behaviour:

• New situations can cause distress and stress

• May be a way to communicate pain• May be a pleasure• May be a way to gain control by attracting

your attention• This can challenge the health and safety of

self and others

Making Primary Care Services Accessible• Don’t make assumptions• Be aware of your communication• Have a Lead person for learning

disabilities in your practice• Be flexible e.g longer appointment times,

quiet environment, don’t have to wait• Provide information in different formats

e.g. symbolised appointment cards, photos of staff on doors

• Multi-disciplinary approach

Completing LD Template?

• Does it have to be Annual health check?• No - it can be completed over a number

visits• Yes – annually or fill in remaining gaps• To obtain payment – the template must be

complete, inc date of completion. Even if completed over several visits.

To Obtain Payment• GP list & aligned list – crosschecked by

commissioning• All fields must be completed including date of

completion• Further quality checks are carried and may be

expanded in future• Statistics used for CQC and by SHA to

compare with other areas.

LD DES Report

Patients aged 18+ on the practice LD register Practice name: Practice code:

Report date:

Patient ID

Date of Birth Sex

Learning disability

health check

Learning disability

health check

invitation

Learning disability

health check

declined

Learning disability

health check DNA

Blood pressure BMI Urinalysis

Health Action Plan

completed / reviewed

Health Action Plan

offered

Health Action Plan

declined

Aligned to Adult Social Care

register Comments19520511 F 20110324 20110324 20110324 20110324 20110324 y

Submissions in 2010/2011 showed a vast increase in the number of health checks completed, however it is felt that with improvements in completing the template will reflect the true number of healthchecks completed in GP practices.

● Blood Pressure, BMI, Urinalysis completed, but no health check date completed.● The health date completed, but no Blood Pressure, BMI, Urinalysis dates entered, therefore deemed as not a full health check. ● Full completion of all fields, could be further analysed for further assessment of the service. ● Blood Pressure, BMI, Urinalysis are considered to be a core part of the review and may be expanded to include further key elements.

If none of these have been entered, but there is a health

check date, this will not receive a payment as it is not deemed that

a full health check has been

Will change to

Patient Initials

Must be entered to

receive payment

People with Learning Disability Receiving Health checks

•Much progress has been made in the past 12 months, with the LA working closely with practices to get the registers aligned, both ways•More practices have expressed an interest in participating in the DES, which has meant additional training sessions taking place at practices•Currently 23 practices signed up and fully participating

NHS Barnsley ProgressYear 2008/2009 2009/2010 2010/2011 2011/2012 2012/13 Barnsley Progress 0.00% 10.40% 39.50% 56.05% 62.33%

Health Action Plan

Definition:“A Health Action Plan details the action

needed to maintain and improve the health of an individual and any help needed to accomplish these. It is a mechanism to link the individual and the range of services and supports they need, if they are to have better health” (DOH, 2002)

What should be in a HAP?• Identified health needs or issues

• What actions are needed to maintain health

• What actions are needed to improve health

• Who will help ensure these actions take place (especially if this is someone other than the health facilitator)

• Timescales for various actions and when there will be a follow up or a review.

Show Barnsley HNA & HAP

The Mental Capacity ActTo ensure people with learning

disabilities are not denied care or treatment

Based on 5 Principles

1. A person must be assumed to have capacity

2. A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success

The Mental Capacity Act

3. A person is not to be treated as unable to make a decision because he makes an unwise decision

4. All decisions made on behalf of a person who lacks capacity should be made in his best interests.

5. Must be achieved in a way that is the less restrictive of person’s rights and freedom.

The Mental Capacity Act

A person is unable to make a decision if she/he is unable to:

• Understand the information relevant to the decision

• Retain that information• Use or weigh that information as part of the

decision-making process• Communicate his/her decision

Cancer Screening Project How?• We visited 35 out of

38 GP practices in Barnsley.

• We included everyone in the eligible age ranges.

• We didn’t include people who had a hysterectomy / mastectomy or people who had left GP practices.

Results

Screening Programme

Total eligible

Comp % Total eligible

Comp %

Cervical 25 – 49

220 80 36.3 236 81 34.3

Cervical 50 – 64

83 27 32.5 87 28 32.2

Breast 50 – 70

115 48 41.7 126 62 49.2

Bowel 60 – 69

103 17 16.5 113 17 15.0

Bowel 70 – 75

31 5 16.1 32 2 6.3

Our figures PRIMIS figures

Comparison to general population

Comparison of Cancer Screening

0.00%10.00%20.00%30.00%40.00%50.00%60.00%70.00%80.00%90.00%

Cervical 25- 49

Cervical 50- 64

Breast 50 -70

Bowel 60 -69

Bowel 70 -75

LD population in Barnsley

General Population

Improving Efficiency NHS Cervical Screening Programme 2011 Annual Review (2010/11 figures)

NHS Breast Screening Programme 2012 Annual Review (2010/11 figures)

Evaluation of the 3rd Round of the English Bowel Cancer Screening Pilot – December 2009 (Over 3

rounds of screening in pilot areas)

Reasons not accessed

• Cervical Screening • Disclaimer• Refused• Non-responder• Parents refused• No information• Not indicated as not

sexually active• Reference to MCA and

patients best interests (2 cases)

• Breast screening• Declined • Did not attend• No information

• Bowel Screening• Failed to return kit• No information

Conclusions

• People with learning disabilities do not access cancer screening the same as the general population.

• Main reason is because of lack of mental capacity and understanding of the importance.

• Health professionals lack of knowledge how to support people with learning disabilities

Recommendations• For patients who are known to the learning disability service and

have a worker allocated to them, the intention is to discuss each person who has not received screening. This will enable discussion to take place with the person so this can be revisited, if deemed in the person’s best interests, or recorded at the GP surgery in a more appropriate way.

• To introduce a simple tool to aid mental capacity assessments, using the two-stage test of capacity, to be carried out by the decision maker at the time of consultation.

• To introduce a simple tool to aid best interest decision making by the decision maker at the time of consultation.

• To have the mental capacity assessment and best interest decision form put on a template in all GP practices.

• To develop a training programme about the importance of cancer screening to deliver to staff teams who work in the community.

• To re audit in 2016.

Show Capacity Assessment & BI From

Scenario• Sally – mild/moderate LD, reports of

bleeding pv post menopausal. • Will not comply with cervical smear

in surgery.• What would you suggest?

Scenario • Referral to hospital ->• Referral for capacity assessment re EUA to

CLDT• Capacity assessed by psychologist?? Has

capacity!• Not returned to hosp or GP. • One year passed• Picked up by luck during cancer screening audit• GP referred back to hospital• ALN involved re Best Interest decision – no

capacity for this decision• 5% of ladies who report bleeding post

menopausal have some sort of tumour!

Consent• People with learning disabilities are

often excluded from making decisions about their own health

• DO NOT judge someone as incapable to consent until all practicable steps to help the person to make their own decision have been exhausted

• Decision about capacity to consent should be a multidisciplinary one and advice from the carers or family who know the person well should be sought

Consent• If you come across an adult without

capacity?- The person wholly responsible for the

intervention must decide if it is in the person’s “best interests”

- Even if a person has not been able to consent, it is important to help them understand what is going to happen to whatever extent they can

- No-one can consent to or refuse treatment on behalf of another adult who lacks the capacity to consent

The Mental Capacity Act Recap• Don’t make assumptions• Consider the person’s own wishes,

feelings, beliefs and values• Incapacity to consent only applies to

specific situations and occasions• Listen to family carers and supporters

in obtaining a ‘best interests’ judgement

• Record any decisions

Equality Act 2010

• 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.

Communication• For some PLD problems are obvious e.g.

they can’t speak or their speech is unclear.

• For some it may be less obvious e.g. they may not understand everything that is said or written down. Can affect their ability to function fully in everyday activities.

• Making +ve changes to our own communication can help e.g. many PLD can understand more easily if you point, gesture or mime along with speaking, or use pictures/photos

Factors relating to the individualFactors relating to their supporter

Factors relating to the environment

What slows down or stops communication?

Factors relating to written information

Factors relating to the individual

Hearing VisionPhysical and

Mental Health

Medication Time Comfort

Understanding Expression

Factors relating to their supporter Lack of familiarity with person and their individual communication methods;

Limited experience using specific communication methods;

Overestimation of level of comprehension;

Using verbal and written language that is too complex;

Not allowing sufficient time.

Factors relating to the environment Noise levels, visual distractions;

Degree to which person’s communication methods are used by others;

Opportunities for communication;

Helpful labelling and signposting;

Consistency of approaches and responses from others;

Factors relating to written information

Many people with L.D. have very limited literacy skills

High incidence of visual impairment (often undetected) amongst people with L.D.

We use difficult words and jargon

We use long complicated sentences

Style and layout not helpful

Tip One

Get to know the person

• Spend time getting to know how the person communicates;

• If the person doesn’t already have one consider speaking to support staff to develop a “COMMUNICATION PASSPORT”

Top tips for effective communication

Tip Two

Adapting your language• Use short, simple sentences of common everyday words;

• Use the person’s own vocabulary;

• Try using open questions or changing the question around to check response.

• Avoid analogies as these may be taken literally.

Top tips for effective communication

Tip Three

Be prepared to use alternative methods of communication such as signing, charts or books/photos.

Top tips for effective communication

Tip Four

Allowing time

• During a conversation some people will need lots of time to understand and express themselves;

• For some people you will need to go over ideas on a number of occasions – understanding may be a gradual process.

Top tips for effective communication

Tip Five

Never assume understanding

Many people with learning disabilities will appear as if they have understood and may be able to repeat back what you’ve said. Always be cautious and check this out. Ask them to explain it in their own words.

Top tips for effective communication

Tip Six

Preparation for appointments

• Investigations – Colonoscopy & Gastroscopy – Don’t refer directly. Refer to consultant first – BI decision.

• Help people to understand what is going to happen by visiting hospitals etc. before the appointment date.

Top tips for effective communication

Top tips for effective communication

Tip Seven

Ask for double consultation time

• When referring someone to the hospital send a letter stating person has a learning disability and cc Tracey Bostwick, Acute Liaison Nurse.

• Ask for a longer appointment. Choose and Book doesn’t allow.

Top tips for effective communication

• As the doctor/practice nurse, speak to the person with learning disabilities first. Only ask assistance from support staff/family if something is not clear.• Be prepared to repeat, re-word or explain in several different ways what the doctor says and then allow the person to respond.

• Some people with learning disabilities are not used to being asked their opinion and will need encouragement.

Tip Eight

Appointments

Top tips for effective communication

Tip Nine

Do not assume the person will understand the link between an event and their illness.

People with learning disabilities may not make the connection between something that has happened and them feeling ill.

Using Visual Resources• Need to consider the person’s: -• Level of symbolic development• Eyesight and perception• Physical abilities• Exposure and experience• Also – what resources are

available to you?

150

80

90

100

110

120

140

130

V H S

Real objectVideo

information Photos

Clip Art

Symbols Change Pictures

Beyond Words Books

REMEMBER:There are always ways of increasing service users’ understanding and facilitating their expression

IT’S UP TO US TO MAKE THE CHANGES

Tip Ten

Working TogetherAt different times in their lives, people with learning

disabilities require different levels of support from different services

Role of Community Learning Disability Team• Provide health/social interventions and specialist therapies to support

independence

• Help People with Learning Disabilities to access general health services

• Share expertise, including training, advice and practical support to people with learning disabilities, their families, carers and other agencies

• Support people with Learning Disabilities to stay healthy and safe eg. Health promotion/Specialist assessments

• Support the communication needs of people with learning disabilities and help other services to communicate effectively

• Develop new ways of working with others to deliver better services for people with learning disabilities

Working TogetherRole of Carers• Advocacy• Physical & Emotional Support• Monitoring changes in health, and reporting relevant

information backRole of Social Care Support• Monitoring Changes and reporting any relevant information

back• Housing• Work/day opportunities• Individual Budgets

Referrals – Anyone can contact the Community Learning Disability Team for help and advice or make a referral by completing an EASYCARE REFERRAL FORM

Tel: 01226 775377

Documents for Reference• Valuing People – DoH (2001)• Treat Me Right – Mencap (2004)• Death by Indifference – Mencap (2007)• Healthcare for All – Independent Inquiry by J Michael, DoH

(2008)• Valuing People Now– DoH (2009)• Six Lives: the provision of public services to people learning

disabilities (2009)• Equal Treatment, Closing the Gap – Disability Rights

Commission (2009)• Death by Indifference, 74 deaths and Counting – Mencap (2012)• Health Inequalities & People with Learning Disabilities in the

UK:2012 – Improving Health and Lives, Learning Disabilities Observatory.

• Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) – (2013)

Thank You!!

Thanks for coming

Sandra Montisci

sandramontisci@barnsley.gov.uk

Joanne Brown

joannebrown@barnsley.gov.uk

01226 775663/775642/775661