We need a national group to champion the care of people with learning disabilities, says Jim Blair
Individuals with learning disabilities are admitted more frequently to hospital compared with the general population. Mencap’s report in 2007, Death by Indifference, detailed the stories of six people with learning disabilities who Mencap and their families believed died unnecessarily in healthcare settings. The report focused on the care decisions taken suggesting that they were based on assumptions about learning disability and quality of life, and not on the life-saving interventions required.
In 2009 the Parliamentary health service ombudsman, in a report examining these deaths, noted: “The quality of care in the NHS and social services for people with learning disabilities is at best patchy, and at worst an indictment of our society.” Health inequalities start early in life for people with a learning disability and can act as barriers to receiving appropriate care. In order to address these inequalities, reasonable adjustments need to be made to ensure that treatment is equitable.
Hospitals need to adhere to the Equality Act 2010 and ensure reasonable adjustments are in place. Examples of reasonable adjustments are having no fixed visiting times for relatives, carers and friends of people with learning disabilities, providing longer appointments and food and drink for carers. It is vital that all hospital staff involve and engage with the person, carers and families.
“The employment of learning disability nurses in acute hospitals has yielded many improvements but it is vital that such people are in senior positions such as consultant roles”
Adopting a “hospital passport” will assist in improving the person’s care and treatment. A hospital passport is completed by the individual and those who know them best and includes information on how they communicate, express pain, eat and drink, past medical information and their likes and dislikes. This enables people to be directly involved in their care and treatment, and ensures that health professionals see the person in a more holistic manner thereby treating the person and not merely their ailments. Such information can assist when considering a person’s best interests.
Best interests need to be applied when a person has been assessed as lacking the capacity to consent to a care and treatment option. In order to act within the Mental Capacity Act, clinicians must engage and involve the person, carers, families, friends and professionals involved in supporting the person in the decision-making process. This will ensure that the principles of the act are adhered to and timely, effective treatment can be provided, and assumptions about a person’s quality of life avoided.
Since Death by Indifference in 2007 many things have changed for the better but as Mencap’s recent report, Death by Indifference: 74 Deaths and Counting, clearly shows there is still a great deal to do to ensure that people with a learning disability regularly get good, appropriate and safe care and treatment when in hospital. The employment of learning disability nurses in acute hospitals has yielded many improvements, but it is vital that such people are in senior positions, such as consultant roles, where they can have a significant clinical leadership role in directing hospital stays, policy and development, and education of staff.
In order for hospitals to get it right for people with learning disabilities they must involve such individuals in sharing their experiences by being employed to work in hospitals. They could also have a role on committees such as patient reference and access committees or in policy development groups. This would help to educate all hospital staff and enable people with learning disabilities to have a voice in how their services are run.
A national group should be created that focuses on the care of people with learning disabilities to ensure that the issues highlighted in various reports are addressed. This group should comprise people with learning disabilities and their families and health professionals. The group must have the authority to monitor conditions and assist regulators, professional bodies, commissioners and legislators to enforce evidence-based practices within a safe, lawful structure, which focuses on a human rights approach to care and dignity.
Jim Blair is consultant nurse, learning disabilities at St George’s Hospital and senior lecturer, learning disabilities, at Kingston and St George’s Universities