A learning disability (LD) is a significant, lifelong condition which started before adulthood that affects a person’s development, and means they need help to understand new or complex information, learn new skills and cope independently. (The Same as You, 2000; Valuing People, 2001; CSP, 2015).
People with LD experience significant health inequalities and barriers to accessing good healthcare. On average, the life expectancy of women with an LD is 27 years shorter and for men is 23 years shorter relative to the general population (LeDeR, 2019).
The Learning Disabilities Mortality Review (LeDeR) and Public Health England (PHE) have published data on specific health inequalities. To support healthcare in making changes to more effectively meet the needs of this population, the NHS 10 Year Plan pledges to reduce health inequalities and NHSE&I have developed guidance.
Health Profiles and Dietetic Need
It is clear to see how the majority of the health inequalities directly align with the role of dietitians. Here are a few:
Constipation – Constipation is estimated to affect up to 50% of the LD population (LeDeR, 2019). The NHSE&I and LeDeR collaboration, ‘Action from Learning’, reports 12 cases where constipation was the cause of death.
Encourage conversation to establish frequency. There are some great resources to educate on the topic.
Osteoporosis – Increased risk factors associated with the LD population include reduced opportunity for weight-bearing activity, anti-epileptic drugs (Srikanth R et al, 2011), low body-weight and lower sun exposure.
Assess based on the individual presentation and history. Are there enough risk factors or evidence to meet calcium requirements for osteoporosis of 1000mg?
Weight – People with LD are more vulnerable to being underweight as well as obese. Being underweight is associated with profound and multiple learning disabilities (PMLD) where other feeding complexities are likely i.e. dysphagia, reflux, enteral feeding. While greater risk of obesity is seen in more independent populations and those with Downs Syndrome and Prader-Willi Syndrome. (NHS Digital, 2019). It is therefore not surprising that there are increased risks in relation to other identified health inequalities e.g. cancer, hypertension, CVD and type 2 diabetes (PHE, 2020).
Diabetes – Prevalence of type 2 diabetes is in the LD population developing earlier in life. And prevalence of type 1 diabetes is double (NHS Digital, 2019).
Adapted from NHSE&I Guidance for supporting people with LD, 2020
- Be aware of diagnostic overshadowing: This occurs when the symptoms of physical ill health are mistakenly attributed to a mental health/behavioural problem or the person’s LD or autism. LeDeR document this occurs across primary and secondary care services.
- Pay attention to healthcare passports: Some people with a LD and autism may have a healthcare / hospital passport, pain profile which gives information about the person and their health needs. Ask the person and/or their carer if they have these.
- Listen to parents/carers: The family / carer will have a wealth of information about the individual and medical background. Include them in the consultation.
- Make reasonable adjustments: This is a legal requirement and is important to help you make the right diagnostic and treatment decisions for an individual. Examples include: allocating a clinician by gender, taking blood samples by thumb prick rather than needle, providing a quiet space to see the patient away from noise. You can ask the person and their carer/family what reasonable adjustments should be made for that individual. Adjustments aim to remove barriers to improve access to good healthcare
- Communication: Check with the person themselves, their family/carer or their hospital/communication passport for the best way to communicate. Use simple, clear language, leave longer breaks for replies, avoiding medical ‘jargon’, consider using pictures and large font. Some people may be non-verbal and unable to tell you how they feel. All publicly funded services are required to follow the Accessible Information Standard.
- Understanding behavioural responses to illness/pain/discomfort: Pain is an abstract concept. Some people with LD cannot understand or accurately express pain in the expected way and it may be communicated through changes in behaviours, rather than verbal expression. This does not mean there is a high pain threshold.
- Mental Capacity Act: Assess capacity in line with the person’s communication abilities and needs, remember the principle of the Mental Capacity Act in making appropriate efforts and adjustment to enable decision making wherever possible.
- Ask for specialist support and advice: Your acute and community learning disability teams/liaison nurse can help you with issues of communication, reasonable adjustments, assessment of pain.
- Mental wellbeing and emotional distress: It is estimated that 40% of adults and 36% of children and young people with an LD and/or autism experience mental health problems. Change in routine can have a big effect on emotional and mental wellbeing. Being in hospital may be frightening for them and lead to adverse behaviours.
Briony is passionate about health equity and serving people with Learning Disabilities. Health activist. Advocating for a fairer and more informed society by raising awareness with an evidence-based approach to educating students, health professionals and beyond. LD Dietetic Clinical Lead Cornwall, LD Professional Development Officer for BDA MHSG.