GPs Learning Disability Register – Information for parents and carer

People with learning disabilities experience poorer health compared to the rest of the population, but some of this ill health is preventable.

Over one million people in the UK have a learning disability but only 200,000 are on their GP’s Learning Disability Register*.

We know that people with a learning disability often have difficulties accessing health services and face inequalities in the service they receive. The Government is asking parents and carers to speak to their GP and ensure their sons/daughters or the people for whom they care are registered. It is hoped that this drive will ensure better and more person centred health care for people with learning disabilities.

The Learning Disability Register is a record of people with a learning disability who are registered with each GP practice.  The Register is sometimes referred to as the Quality Outcomes Framework (QOF) Register.

Health services have a duty to make changes to their services, known as reasonable adjustments (e.g. easy read information, longer appointments, clearer signs at the practice, help to make decisions, changes to policies, procedures and staff training to ensure that services work equally well for people with learning disabilities).

Unless a patient is registered on the GP systems as having a learning disability, then reasonable adjustments to care for that person cannot be anticipated and made.

You can find a database with lots of examples of reasonable adjustments in health care settings here. If you want to know more about the duty to make reasonable adjustments in health care, take a look at the website of the Citizen’s Advice Bureau. The site contains a useful definition of what’s meant by ‘reasonable’

Key benefits of being on the Register are:

  • Better information about the health needs of people with learning disabilities in a given locality;
  • Better planning of health and care services for people with learning disabilities;
  • An ability to anticipate an individual’s needs before they attend health or care settings;
  • Better understanding and integration of needs across health, care, education and employment;
  • Better transition planning for young people with learning disabilities who are leaving school or college and approaching adulthood. If children and young people are on the register support and adjustments can be put in place before they transition
  • If a child is on the Register they will be invited for an Annual Health Check once they reach 14 years of age (provided the GP offers this service, most GP practices do but there are a small number who do not)

You can find more information about Annual Health Checks on our website.

Its never too early (or late) to join your GP’s Learning Disability Register; you can join at any age. 

If you are not sure you are on the Register, you can ask the receptionist at your GP Practice to check for you.

The doctor may have made a note on the record that a person has Down’s syndrome but this does not automatically mean they have been put on the Register. When you speak to the GP about being registered, the needs and support of the person in health settings can be discussed. This information can be entered on the person’s Summary Care Record (SCR) so that all health professionals at the practice know about their needs and how best to support them.

If the person is over 16 years of age or older, they must give their consent:

  • for information about their support needs to be added to their SCR
  • to which information can be shared and with whom

There is information about making everyday health, financial and welfare decisions post 16 here

* NB: The Learning Disability Register is NOT the same as the Disability Register held by the Local Authority (Social Services)