Learning Disability

A new report, the CIPOLD report (Confidential Inquiry into premature deaths of people with LD) has recently published, and been discussed in a BMJ editorial

 The results are truly shocking:

·         People with LD in the UK die 16 years younger than the general population. Women with LD die 20 years earlier than would be expected, and men 13 years prematurely

·         There are biological and genetic reasons for some of this excess mortality, but 42% of these deaths are estimated to be premature and avoidable. They are attributable to delays in diagnosis and treatment, and failure to provide  adequate care.

·         Over a thousand adults and children with LD are dying each year in the UK through failure to provide adequate care.

 Depressingly, as the BMJ editorial points out, the results are ‘alarming but not surprising’ and seem to agree with multiple previous reports, inquiries and research studies over the years. The report argues for changes at a national level (e.g. establishing a LD mortality review body, better cohesion with health and social care, commissioning priorities etc) but in the meantime what should be doing now in primary care?

 

·         Make sure that we have an up to date register of all adults with a LD

o   And refer adults you suspect may have a LD but have not been assessed

·         We need to provide a system of organised and systematic detailed health checks for people with LD. The evidence for this approach is very strong, and yet only 53% of adults in England with a LD receive an annual check  click here

o   To help us introduce and deliver this, there is an excellent RCGP guide to health checks in people with LD which is freely available

o   The health checks should focus on the general (sensory impairment, constipation, dental, sexual health, cardiometabolic risk etc) and also the specific (e.g. in Down’s syndrome checking TSH and coeliac serology, and over 40 for dementia and Atlanto-axial instability and cervical myelopathy)

·         We need to be very aware of the concept of ‘diagnostic overshadowing’. This means mistakenly attributing symptoms of ill-health as being due to a behavioural problem, or an inherent part of their LD, rather than a sign that something is wrong. This leads to under investigation as symptoms are rationalised and interpreted as being part of the LD, and means that common and helpable problems are missed e.g. a change in behaviour may be caused by hearing loss due to ear wax, faecal soiling by overflow from constipation, cries and ‘hand-mouthing’ by gastro-oesophogeal reflux etc

 What about the extra time needed to perform these health checks?

In the UK there is a DES (direct enhanced service), which is specifically to encourage practices to identify patients with LD and offer them an annual check. Importantly, your patients on the register have to match those on your local authority register so you need to liaise with your local LD team. The practice will be paid c. £100 per health check. For more information on the DES click here

The CIPOLD report is truly shocking. We all have a responsibility to try to improve outcomes for adults with LD, but with our generalist and holistic skills no one is better placed than the GP to make a difference.

NB: Top Tips on helping people with LD by Matt Hoghton, RCGP Lead for LD ·         In order to deliver dignified, respectful and compassionate care you need to make extra time ·         Communicate with the person with the LD first, rather than their helper, and involve them as much as possible ·         Use language that they understand at a simple level, enhanced by pictures or symbols if necessary and demonstrate any examination or procedure before you perform it

 

Resources:

 Mencap have an excellent web-site full of useful health information for people with LD www.easyhealth.org.uk

RCGP guide to health checks in people with LD

CIPOLD report

DES guidance 2013/2014