Shared commitment needed to address health needs of people with a learning disability

There is an urgent need for equality and improvement of clinical care for people with a learning disability in Northern Ireland, delegates at a conference have heard.

The ‘Dying for Change’ conference, organised by the Public Health Agency (PHA), brought together policymakers, academics and professionals from across health and social care to focus on what needs to be urgently improved in the care of people with a learning disability.

There are approximately 40,000 people with a learning disability living in Northern Ireland. Research shows that, on average, men with a learning disability die 23 years younger and women die 27 years younger when compared with the rest of the population.

Health Minister Mike Nesbitt said: “One of my key areas of focus since I became Health Minister is working to address health inequalities. We must focus on those people within our communities who disproportionately experience the highest rates of ill health, that includes people with learning disabilities.

 “What is clear for this population is that we do not need a specialist healthcare system, we need a fully accessible general healthcare system, underpinned by reasonable adjustments and the strategic deployment of specialist staff, such as learning disability nurses. To my mind, we require a whole system approach. If we get it right for people with a learning disability, we will get it right for everyone.”

Heather Reid, Interim Director of Nursing, Midwifery and AHPs at the PHA, said: “Everyone has a right to equal access to healthcare and equal treatment across all areas of their lives. People with a learning disability receive care from a wide range of health and social care services, but often experience challenges accessing these.

“People with a learning disability can often require different support to help them stay healthy and live well, but unfortunately, too often they experience large disparities across services compared with the rest of the population. 

“Poor quality or missed healthcare causes health inequalities and avoidable deaths. People with a learning disability can often experience delayed diagnosis and treatment because of factors such as lack of reasonable adjustments, diagnostic overshadowing, and lack of appropriate training for clinical staff.

“There is an urgent need for greater awareness and understanding across all of health and social care in Northern Ireland of the specific needs of people with a learning disability and specific risk factors that are contributing to premature and avoidable deaths.”

Martine Madden, whose daughter Jessica has a severe learning disability and epilepsy, spoke at the conference as a parent and carer:

“Jessica is now 31 years old and continues to live at home and has needed hospital services for most of her life. I always want to ensure Jessica receives the best treatment possible and I believe she has the right to the same services that her other two sisters can avail of in their life. Unfortunately, Jessica’s experience has not always been good and I feel strongly that this needs to change to ensure that appropriate care is received by all who need it.”