Making a difference for patients with learning disabilities

Patients with a learning disability may have poorer physical and mental health and live less long than patients without and an annual health check can help to reduce this inequality. From April, the fee paid for each learning disability health check will rise from £116 to £140, as a Direct Enhanced Service, so while some practice may regard it as optional, there is a financial incentive as well as the opportunity to improve health outcomes

In the UK learning disability is a term generally used to describe people who have had a delay in development which has had an effect on them achieving the ‘normal’ developmental milestones. This may be emotional, spiritual, intellectual or social development.¹ The Department of Health in its document Valuing People: a new strategy for learning disability for the 21st Century’² defines a learning disability as a ‘significantly reduced ability to understand new or complex information, to learn new skills’ and a ‘reduced ability to cope independently which starts before adulthood with lasting effects on development.’

For most people, a learning disability will occur or be recognised at birth or in early childhood and will be present throughout a person’s life. People can be learning disabled in many different ways and the effects and severity of the learning disability can also vary enormously from person to person. There are recognisable genetic syndromes which result in learning disabilities, for example Down’s syndrome and Fragile X, however some people have a learning disability which has no known cause. There is a wide variety in the support needs of people with learning disabilities, with some living very independently with little or no support while others need care and support on a 24 hour basis. Although there are no definitive figures for the number of people who have a learning disability in England, it is has been estimated that in 2012 the number was 1.14 million.³

Patients with a learning disability may have poorer physical and mental health than patients without and this is a health inequality that – to a significant extent – can be avoided.⁴ Annual health checks for patients with a learning disability have been shown to be effective in identifying unmet health needs, and have been referred to as a ‘reasonable adjustment’ for this group of patients.⁵ Reasonable adjustments range from removing physical access barriers, to adjusting service delivery e.g. allowing additional time, so that the delivery of the service works equally well for patients with or without a learning disability.⁶

The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) reviewed the deaths of 247 patients with learning disabilities between 2010-2012.⁷ The average age of death for a male without a learning disability was 78, compared to 65 for a male with a learning disability. In females without a learning disability, the average age of death was 83 compared to 63 for a female patient with a learning disability.⁷

Patients with a learning disability are reported to be less likely to access healthcare.⁸ Guidance from the Royal College of General Practitioners (RCGP) ensures GPs, practice nurses and administration teams can organise and perform quality annual health checks.⁸ This guidance acknowledges the value and influence that each member of staff, no matter what their role, can have for a patient with a learning disability.

The RCGP states that the learning disability health check is important to:

• Improve the health outcomes for people with learning disabilities
• Diagnose and appropriately treat medical conditions
• Perform screening for conditions related to the patient’s specific learning disability
• Improve access to health promotion for patients with a learning disability
• Develop and enhance relationships within the primary care setting including GPs and practice nurses, which may also aid in a smooth transition from paediatric to adult services at age 18.

From April, the fee paid for each learning disability health check will rise from £116 to £140, as a Direct Enhanced Service. Previously the Quality and Outcomes Framework (QOF) only required practices to maintain a register.^9,10

While it could therefore be suggested that GP practices may regard the learning disability annual health review as optional, enhanced services provide GP practices with a financial incentive to carry out this health check, as part of the negotiated General Medical Services (GMS) contract for 2017-2018.

Of course, when trying to implement change within a clinical environment, it is important to consider the potential barriers. The competing demands of our healthcare system, including the ageing population are widely recognised, alongside a ‘tighter funding environment’.¹¹ Despite this, practice nurses are encouraged to try to implement the learning disability review to help identify required interventions and thus improve outcomes for this group of patients – the learning disability review should be treated, and given the same recognition as other long term condition (LTC) reviews such as those for asthma or diabetes.

Appropriate education on the value of the annual health review for learning disability patients may encourage GP practices to participate in this enhanced service, which requires commitment from both clinical and non-clinical teams, and from commissioners who should encourage GP practices to participate by providing support via the specialist learning disability team and/or primary care liaison nurse.¹² Engaging with local specialist learning disability teams will help practice nurses to deliver reviews and strengthen professional relationships between different teams.

CASE STUDY

Adam, a 20-year-old young man lives at home with this mother who is his main carer. He has a moderate learning disability affecting his mobility, personal hygiene and communication. His BMI is 36 kg/m² which his mother attributes to lack of exercise and poor understanding of a balanced diet. Adam also has asthma. He is prescribed two inhalers, a combination inhaled corticosteroid and long-acting B2 agonist, and a short-acting bronchodilator.

Adam does not attend the practice regularly – his mother says she doesn’t want to waste the doctor’s time – but his GP has requested an earlier asthma review because of frequent requests for a short-acting bronchodilator, indicating over use or ineffective inhaler technique. Adam completes the Asthma Control Test and scores 12 out 25 and his practice nurse suggests his inhaler technique requires improvement. Adam’s mother feels information in relation to Adam’s asthma has not been at the appropriate level for him to understand and he has been left feeling confused about his condition and its management.

REVIEW

In these days of patient empowerment and self-management, it is vital that patients have the appropriate advice, support and resources to use their inhaler effectively, but it is difficult to see how they can self-manage their condition if they do not understand the information that they have been given. This underlines the importance of a holistic approach to each patient’s needs. Adam clearly needs more appropriate resources and understandable information. Research among patients with long-term conditions (LTCs) has shown the value of helping people with long-term conditions – and their carers – to have more control over the services they receive and become expert self-managers of their conditions,¹² and this is equally true in those with learning disabilities. It has been suggested that the link between learning disability and premature mortality may be the result of poor management of the learning disabled patient’s medical condition.¹³

In Adam’s scenario, there are several resources available that the practice nurse may incorporate into the asthma review, or signpost Adam to, such as the easy-to-read information from Asthma UK which explains the condition, medication and what to do in the event of an asthma attack.¹⁴ Taking advantage of each opportunity to teach and reinforce the basic facts about asthma, what defines well-controlled asthma, the patient’s current level of control and the roles of inhaler technique, use of spacers, and self-monitoring are all recommended as part of a quality asthma review.¹⁴

Studies have confirmed that weight issues for patients with a learning disability are more common than in the general UK population.¹⁵ For a person with a learning disability, obesity has been attributed to decreased levels of physical activity, poor diet and potential side effects of prescribed medications.¹⁶

Studies suggest that there is a direct link between learning disability and obesity due to poor access to leisure and exercise facilities, lack of participation in exercise due to restricted mobility, reliance upon others to assist with feeding and food choices, and potential side effects of prescribed medication.¹⁷ Furthermore, there is the risk that parents or carers can be overprotective, and deter people with learning disabilities from participating in activities that might generally be considered to be low-risk such as supervised swimming.¹⁸ This may undermine information given to the patient by health care professionals.¹⁹ Practice nurses need to be particularly alert to the increased risk posed to people with learning disabilities of becoming overweight or obese and should ‘make every contact count’ by encouraging and helping these patients to make healthier choices to achieve positive long-term behaviour change.^18,19

Adam’s BMI is 36 kg/m² and he is therefore classed as obese. Therefore, the practice nurse should explore appropriate interventions to reduce his weight and risk of developing further long term conditions.

Adam’s case illustrates how important it is to take learning disability into account when managing patients with long term conditions, but also shows how useful a specific ‘learning disability health check’ might be in making sure that issues unrelated to a chronic disease are picked up and acted upon.

CONCLUSION

Although an annual health check for patients with a learning disability is not a compulsory requirement of GP services, it is suggested to be particularly beneficial for this group of patients. Practice nurses should take advantage of every opportunity to try to improve their long term health outcomes, recognising the potential additional needs and reasonable adjustments that they can make to do so. Health inequalities for patients with a learning disability are evident, and contact with practice nurses for an annual health check may provide the opportunity for the identification of improvements to the management of a condition, or necessary intervention to improve a patient’s health and wellbeing. Practice nurses are encouraged to ‘take the first step’ to initiating learning disability reviews by raising the subject with the GPs and practice manager. You are in a unique position to make a difference.

REFERENCES

1. Gates B. The Nature of Learning Disabilities. In: Gates B(Ed). Learning Disabilities. Towards Inclusion. 5th Edition. Elsevier; 2007

2. Department of Health. Valuing People: A New Strategy for Learning Disability for the 21st Century. London: Department of Health; 2001

3. Emerson E, Hatton C, Robertson J, et al. People with Learning Disabilities in England 2012. Improving Health and Lives. https://www.improvinghealthandlives.org.uk/publications/1185/People_with_Learning_Disabilities_in_England_2012

4. Glover G. Annual health checks for people with learning disabilities, 2016. https://www.improvinghealthandlives.org.uk/projects/annualhealthchecks

5. Baines S, Emerson E. Health Inequalities & People with Learning Disabilities in the UK, 2010. https://www.improvinghealthandlives.org.uk/uploads/doc/vid_7479_IHaL2010-3HealthInequality2010.pdf

6. Royal College of General Practitioners and Royal College of Psychiatrists, Learning Disability Observatory. Improving the Health and Wellbeing of People with Learning Disabilities: An Evidence-Based Commissioning Guide for Clinical Commissioning Groups (CCGs), 2012. http://www.rcgp.org.uk/clinical-and-research/toolkits/~/media/47F58818316D41E1B0CE4C4CC231EA90.ashx

7. Blair P, Fleming P, Heslop P, et al. Confidential Inquiry into Premature deaths of People with Learning Disabilities, 2013. http://www.bristol.ac.uk/cipold/

8. Royal College of General Practitioners. A Step by Step Guide for GP Practices: Annual Health Checks for People with a Learning Disability, 2010. http://www.rcgp.org.uk/learningdisabilities

9. Health and Social Care Information Centre. Quality and Outcomes Framework. www.hscic.gov.uk/qof

10. NHS England. Outcome of 2017/18 GMS Contract Negotiations, 2017. https://www.england.nhs.uk/wp-content/uploads/2017/02/gp-contract-17-18-letter-to-service.pdf

11. Robinson C, Turner S. Health Inequalities and People with Learning Disabilities in the UK, 2010. https://www.improvinghealthandlives.org.uk/uploads/doc/vid_8915_IHAL2010-04%20Guidance.pdf

12. The Kings Fund. The evolving role and nature of general practice in England, 2011. https://www.kingsfund.org.uk/sites/files/kf/field/field_related_document/gp-inquiry-report-evolving-role-nature-2mar11.pdf

13. MENCAP. Death by Indifference. London: MENCAP;2007. Update 2012. https://www.mencap.org.uk/press-release/mencap-report-finds-nhs-still-unsafe-people-learning-disability

14. Asthma UK (2016) Managing asthma in adults. Available at: https://www.asthma.org.uk/advice/manage-your-asthma/adults/

15. Bhaumik S, Watson J, Thorp C, et al. Body mass index in people with intellectual disability, associations and service implications: a population based prevalence study. Intellectual Disability Research 2008;52(4):287–298.

16. Public Health England. Obesity and disability, 2013. Public Health England. London.

17. Cotton A, Jinks A, Rylance R. Obesity interventions for people with a learning disability: an integrative literature review. Journal of Advanced Nursing 2010;67(3):460–471.

18. Chapman M, Craven M, Chadwick D (2005) Fighting fit? An evaluation of health practitioner input to improve healthy living and reduce obesity for adults with learning disabilities. Journal of Intellectual Disabilities 2005;9(2):131–144.

19. Murfin M, Varley E. An Implementation Guide and Toolkit for Making Every Contact Count: Using every opportunity to achieve health and wellbeing. Trent Publications. NHS Midlands and East; 2014