Health checks for young people with learning disabilities vital, says RCGP

The Royal College of General Practitioners (RCGP) is urging GPs to offer young people with learning disabilities in England, aged 14-17, a comprehensive annual health check from April.

The decision to extend the Directly Enhanced Service (DES) already provided to adults with learning disabilities was been made as a result of recommendations following last year’s Confidential Inquiry into premature deaths of people with Learning disabilities (CIPOLD).

The inquiry found that three times as many people with learning disabilities die before the age of 50 compared to the general population.

It was also announced in December that the Quality and Outcomes Framework (QoF) Learning Disability Register is to be extended from the current guidance of 18 years and older to include every one with a learning disability from birth. The aim is to ensure the clear identification of people with learning disabilities on the NHS central registration system and in all healthcare record systems. The extension of the register will require the CCGs, paediatricians and Local Authorities to identify children and young people to GPs.

Dr Matthew Hoghton, who is Medical Director of RCGP’s Clinical Innovation & Research Centre (CIRC) and was the lead investigator in CIPOLD, said: “Many GPs will be unaware of some important changes coming in April 2014, but they will need to start planning now if they are to be ready. It is vital that GPs work closely alongside Clinical Commissioning Groups, Local Authorities and their SEN Departments, local paediatricians and those responsible for neurodisability in order to identify and populate registers with details of young people who have learning disabilities.

“Young people of 14-17 years with learning disabilities are recognised as being particularly vulnerable to issues around their health and these changes aim to help the transition from children’s to adult services. Particularly if parents aren’t strong advocates for them, this is a time when healthcare needs can fall between the cracks. A truly joined up effort will be needed to ensure that we are successful in helping these young people.”

GP practices are now being paid for the health checks on a quarterly basis rather than the end of the financial year which will help hard pressed GP budgets.

There are a number of other important changes for GPs to be aware of: with the new Children and Families Act, every child with a learning disability will be entitled to an Education, Health and Care (EHC) joint plan from September 2014. In addition, NHS England, which is currently reviewing future mortality surveillance in this vulnerable group, is expected to announce their plans at the Confidential Inquiry Conference in London on Friday 29th March 2014.

CIPOLD reported its findings to the Department of Health in 2013 and a summary was published in the Lancet in December. The University of Bristol study showed that nearly a quarter (23%) of the 247 deaths of people with learning disabilities were younger than 50 years of age when they died.

In contrast to the general population, women with learning disabilities died at a younger age than men. The median age at death of men with learning disabilities was 65 years, 13 years younger than men in the general population of England and Wales (78 years). The median age at death of women with learning disabilities was 63 years, 20 years younger than women in the population (83 years).

Dr Hoghton said of The Inquiry’s findings: “Avoidable deaths amenable to change by good quality health care were unfortunately common. The five key factors that need addressing by us all are a lack of adequate advanced care planning and care co-ordination, understanding and using Mental Capacity Act, people living in inappropriate accommodation, a lack of adjusting care as needs changed, and carers not feeling listened to.”