Why is working with people with learning disabilities important?

The risk of children being reported by their main carer (usually their mother) to have fair/poor general health is 2 to 4 times greater for children with learning disabilities when compared to their non-disabled peers.

Outcomes for adults are also worse with 1 in 7 adults with learning disabilities rating their general health as not good.

GPs in Cornwall and the Isles of Scilly count the number of people with learning disabilities. They say that they see about 2,400 people with learning disabilities. Cornwall Council’s register of people with learning disabilities receiving a service is similar in size.

People with learning disabilities who have additional complex needs require specialist services that are close to their homes, preventing the need for hospital admissions when possible.

What is being done?

There are known challenges in access to health care for people with learning disabilities. Actions to address these challenges are in place locally and some of the work includes:

• annual health checks for people with learning disabilities run by GP practices and facilitated by primary care liaison nurses
• the learning disability screening nursing team helps people get access to NHS screening programmes, such as breast screening and diabetic retinopathy
• the acute hospitals that serve Cornwall and the Isles of Scilly both employ liaison nursing teams to ensure that individuals have good access and equitable treatment
• engagement of professionals, family carers and individuals with a lived experience of learning disability, through our Big Health Group and our Transforming Care Partnership
• production of a range of health information materials, including a series of DVDs covering access to various health areas

What else is planned?

Service users and carers continue to raise issues and identify ways to improve services. This information is used as part of the regular planning process. NHS Kernow, alongside Cornwall Council and the Council of the Isles of Scilly, have formed a Transforming Care Partnership to address the needs of individuals with learning disabilities and/or autism who have additional needs related to their behaviour.

“There is a need to shift the balance of power” – Service model for commissioners of health and social care services, October 2015.

• The individual and their family are the lead and are at the centre of decision making.
• The individual and their family must be valued for their experience and expertise.
• Professionals and advocates must work with the individual and their family, working in partnership and towards agreed joint aims and principles.
• The individual and their family members have an option to chair/co-chair or agree a nominated chair for meetings about the care being discussed, whenever possible.
• Professionals must adhere and abide by a complete duty of candour.
• Professionals are open and transparent with individuals and their families regarding all aspects of care and decisions around care.
• Information must be provided in a way that is helpful and accessible to the individual and their family.
• All organisations must listen to and act upon family feedback about the quality and safety of services provided to their relative.
• Carers are entitled to and must be offered a carers assessment.
• All professionals must recognise that families have limited times they can meet and make reasonable adjustments for this.

Download the easy read version of this charter (PDF, 576 KB).