Viewpoint: CCGs must support end in healthcare inequalities for patients with a learning disability

Research from charity Mencap revealed recently over 1,200 adults and children with a learning disability in England are dying prematurely while in NHS care.

Beatrice Barleon: 'Health checks make difference in detecting and treating health problems.'
Beatrice Barleon: 'Health checks make difference in detecting and treating health problems.'

Senior campaigns and policy officer Beatrice Barleon explains how GPs can use their new CCG role to ensure NHS services meet the needs of people with a learning disability.

Recent research shows that there is a long way to go to achieving health equality in the NHS for people with a learning disability. Many parts of the NHS, including GP practices, find it at times difficult to make health services accessible to people with a learning disability, with the result that they often receive inadequate care. CCGs now offer an opportunity for GPs and the wider NHS to end the inequalities they face within NHS services.

Over many years, our campaigning work has given a voice to the serious concerns of people with a learning disability and their families about the standard of care they have received. We have highlighted where NHS services have failed to meet the needs of patients with a learning disability, and how a lack of basic training for staff leads to delays in diagnosis and treatment, a poorer standard of care, and avoidable deaths.

Nearly 100 families have taken the brave step of sharing how they have been devastated by the death of a loved one due to healthcare professionals not understanding the need to make reasonable adjustments, and failing to comply with disability discrimination law in the Equality Act. But we’ve always felt that the deaths we have heard about are just the tip of the iceberg.

Premature deaths

Our latest research has borne this out, finding that every year over 1,200 adults and children with a learning disability in England are dying prematurely.

People with learning disabilities do have poorer physical and mental health than other people, but this is not inevitable. These are health inequalities that can, to a significant extent, be avoided.

Mencap has been working with the RCGP, Royal College of Nursing and a number of other bodies to produce a new charter specifically for CCGs. The charter outlines practical steps they can take to ensure that services meet the health needs of people with a learning disability.

Awareness training

One reason for the poorer health of people with learning disabilities is that they often have difficulty in recognising illness, communicating their needs and using primary health care services. We believe that a commitment from CCGs to provide ongoing learning disability awareness training for NHS staff in their area could make a real difference.

And because patients with learning disabilities are less likely to seek healthcare when needed, we’re also asking CCGs to work with GP surgeries to ensure that more are offering annual health checks. We know that health checks really make a difference in detecting and treating health problems early on.

Health checks DES

Since 2009, GP practices in England can provide health checks for adults with learning disabilities as a DES. Slightly more than half of the adults with learning disabilities known to their GP and their social services department received a health check in 2011/12. But there is still a long way to go.

We know from GPs as well as people with a learning disability themselves that while the numbers of people with a learning disability receiving annual health checks has gone up over the last few years, the quality of some of these checks is at times questionable. For example, some people have had health checks done over the phone, which most would agree presents challenges for certain elements of the check, such as measuring BP.

Getting it Right

For the past three years, our Getting it Right campaign has tried to tackle the issue of disability related discrimination in health settings, and supported local campaigners, health professionals, GP surgeries, hospitals and healthcare authorities to work together to make improvements.

We have been extremely impressed by the work of some authorities and individuals, such as learning disability liaison nurses, and the excellent examples of good practice that have been shared with us. But continuing discrimination means that patients with a learning disability remain at risk.

The charter is now the next step in our campaign and is there to ensure that people with a learning disability are at the forefront of commissioners’ minds. Later this year we will also be releasing some further guidance on how to commission services that truly meet the needs of people with a learning disability.

In the meantime we hope all CCGs will pledge their support to end inequalities in heathcare for patients with a learning disability.

Getting it right for people with a learning disability, a charter for CCGs is available.

  • Beatrice Barleon is senior campaigns and policy officer at Mencap.

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