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Breaking barriers

Breaking barriers
23 April 2015

Reaching people with learning disabilities to ensure they get the right health checks can be difficult. Newham has found an innovative way to meet the needs of this community

NHS Newham Clinical Commissioning Group (CCG) is a clinically-led membership organisation made up of 61 GP practices. It is responsible for planning and buying health services for the people of Newham.

Reaching people with learning disabilities to ensure they get the right health checks can be difficult. Newham has found an innovative way to meet the needs of this community

NHS Newham Clinical Commissioning Group (CCG) is a clinically-led membership organisation made up of 61 GP practices. It is responsible for planning and buying health services for the people of Newham.

Newham has a population of 374,163 that is estimated to rise to 382,000 by 2021. Newham has the youngest population profile of any borough in London, with a high birth rate and population churn. The borough is the second most deprived local authority area in England.

Newham is also one of the most diverse areas in the country with more than 100 languages spoken and 70% of the population is from Asian, black and ethnic minority communities.

Newham faces significant healthcare problems, including high levels of mental illness, cardio-vascular disease, respiratory problems, diabetes, TB and HIV. Newham has the highest under 75s mortality rate for women and the lowest levels of physical activity in London. It also potentially has a high number of people with disabilities who are not known to the health service due to cultural issues.

It is estimated that 286,000 children and young people under the age of 18 and 905,000 adults in England have learning disabilities.[1] This means that roughly 20 people in every thousand have a learning disability. It is also estimated that only 21% of people with a learning disability are known to learning disability services across England. According to Public Health England’s Learning Disability Profile[2], Newham had a total of 1,202 people of all ages registered with their GP practice as having a learning disability. Nine hundred and ninety five of those were aged 18 and above. At present the clinical commissioning group (CCG) knows of 3,965 children between school years two-11 with special needs, of which 298 are identified as having autistic spectrum disorders and 99 are classified as having profound and multiple learning disabilities.

Research shows that people with learning disabilities have some of the poorest health of any group in the UK.[3] They are considerably more likely to die at an early age than the general population – on average 20 years earlier.

One reason why many people with learning disabilities suffer from poor health is that they aren’t always able to recognise that they are ill, they often don’t know where to go if they are unwell, and when they do they often find it difficult to communicate their needs.

The main cause of death within the learning disability group differs from those of the general population. While the most common causes of death for the UK population is cancer (types including lung, prostrate and unitary tract), heart disease and strokes, those with learning disabilities tend to die from respiratory disease, cardiovascular disease and other less prevalent forms of cancer, principally related to gullet, stomach and gall bladder. Some of these causes of death are potentially preventable if health conditions are picked up earlier.

Why carry out learning disability health checks?
In January 2009, the white paper Valuing People Now[4] was launched. It set out a clear national direction of travel for people with learning disabilities. It is based on the premise that people with learning disabilities are people first, with the right to lead their lives like any other, and have the same opportunities and responsibilities.

A recent study[5] looking at premature deaths of people with learning disabilities found that they are still not receiving equal healthcare in all NHS settings. The health inequalities faced by people with learning disabilities in the UK start early in life. This is due to barriers such as being able to accesses timely, appropriate and effective healthcare from an early age.

According to the Centre for Disability Research[6], the number of adults with profound and multiple learning disabilities in England is expected to increase by 1.8% annually from 2009-2026. This increase is expected to be higher in communities that have a younger demographic profile and in those from Pakistani and Bangladeshi communities. Both of these factors apply to the population of Newham.

Disease prevalence is also higher in Newham’s learning disability group with 246 per 1,000 people who are classed as obese or morbidly obese. The high rate of obesity is also associated with a high risk of diabetes. Plus, Newham residents with a learning disability have a higher than average diagnosis of asthma, mental health issues and are more likely to suffer a stroke.

NHS Newham CCG acknowledged that in order for people with learning disabilities to have a more independent life, they need to be healthier. So a big emphasise was put on identifying people with learning disabilities and then delivering an annual health check that can prevent illness and enable earlier diagnosis of health conditions and better treatment outcomes.

Taking action
What did GPs in Newham do to improve access and uptake of health checks for people with learning disabilities?

1. Reviewed the existing learning disability register
Four GP link workers employed by East London NHS Foundation Trust, worked within all 61 of Newham’s GP practices to code and give list-cleansing support.
In order to ensure that the data was accurate two learning disability registers were used. They were:
A. Quality outcome framework (QOF), which identified learning disability patients registered with a Newham GP.
B. Newham Council’s register, which includes learning disability patients known to Newham Council.

These two lists were reviewed and merged to ensure that they captured all patients who have been identified as having a learning disability – creating one up-to-date learning disability register.

The GP link workers then supported each GP practice to go through their practice records to ensure these were coded correctly and that people 18 years and over who have a learning disability were flagged up in the system for annual health checks (in the 2013/2014 financial year, only those that were 18 and above were required to be invited for a health check). They then cross-checked the records with the community learning disability register to ensure people with a learning disability known to health and social care organisations in the borough were included in the register.

2. Training for GPs/nurses and practice staff
All Newham GPs and nurses were invited to attend a disability health check training session with their GP link worker. It was mandatory that at least one GP and one other healthcare professional from each GP practice attended a training session from each surgery.

A learning disability health action plan template was used by all GPs in Newham via EMIS Web (secure, confidential online application that allows healthcare professionals to record, share and use vital healthcare resources and patient information to provide better, more efficient care) to ensure a comprehensive and consistent health check was carried out. All health checks included:

  • Checking the patient’s body mass index, heart, lungs and breathing, state of mental health, blood pressure and doing a urine/stool sample check.
  • Blood test to check for diabetes, thyroids, and cholesterol (where patient consent was given).
  • A review of existing chronic conditions such as asthma, diabetes, eye and dental health.
  • A review of the patient’s prescribed medication.
  • Advice and health promotion with regards to alcohol, smoking and exercise (exercise via community prescription was encouraged).

GP practice staff also took part in learning disability awareness training. This was to ensure staff understood the needs of people with learning disabilities.   

3. Invited people with a learning disability to attend a health check and informed their carers
Once the learning disability register was up-to-date, all those on the list were invited to attend a health check at their GP practice. Easily read letters were posted to individuals and their carers inviting them to book a suitable appointment for a health check, at their convenience. A follow-up telephone call was encouraged along with a text message reminder for booked appointments.
The health check was delivered by a doctor or nurse and in some special circumstances both.
All practices were flexible with their appointment times to ensure a greater uptake of health checks. Each patient with a learning disability was allocated an extended 20-30 minute appointment slot. For those who were unable to attend the practice in person, a health check was conducted in their house by either their GP or nurse.

4. Engagement events
NHS Newham CCG ran a series of engagement events including events during both learning disability awareness week and learning disability health and social care day, where people with leaning disabilities were encouraged to take a health check and discuss other issues.
A patient advisory group was created to help those with learning disabilities and their carers to voice their concerns and suggestions on how to improve services for the learning disability community. Ideas and suggestions from this group were then used to help identify areas of improvement.

5. Streamlined GP referral systems
As part of a wider project NHS Newham CCG focused on streamlining the referral process and resources that GPs use on EMIS Web. GPs were trained to use new forms to refer patients for further treatment e.g. diabetes referral forms that were designed to flag up a patients individual needs to help health professionals make suitable adjustments throughout the patient’s entire health check journey.

6. Provided patients with an action plan to improve their general health
Those receiving a health check left the appointment with a personalised action plan to follow with the support of their carers.
Action plans were used to help patients live a healthier and independent life, encouraging them to eat healthier, exercise more and stay active. It also included further signposting to health and social services where necessary.

Recent data published by Public Health England, rated Newham top in London for supporting local people with a learning disability to have a health check. In 2013/2014 according to records kept by Public Health England 75% of Newham residents who were identified as having a learning disability visited their GP practice for a health check.  
This is as a result of:

  • Reviewing our learning disability register.
  • Correctly coding patient records.
  • Staff training.
  • Making health checks easily accessible.
  • Promoting health checks.
  • Streamlining referral process.
  • Plans for the rest of 2015


Although NHS Newham CCG has had huge success in delivering a high percentage of health checks in 2013/14, the CCG is eager to improve. This year, the enhanced service for learning disability asks practices to include children from the age of 14 and above to be invited for a health check.
GPs along with their designated link workers have revisited the learning disability register to identify all those who fall within the extended age range to 14  years.

NHS Newham CCG is also keen to improve community engagement to better understand how we can provide better care for those with learning disabilities and increase the amount of choice and control they have in their lives. NHS Newham CCG will continue to run engagement events and workshops throughout the year to seek the views of those that use the service.

Dr Anil Shah, MBBS MRCGP DID is clinical lead for NHS Newham CCG.

1.    Emerson E, Hatton C, Robertson J, Roberts H, Baines S, Evison F and Glover G. People with Learning Disabilities in England 2011. (accessed 26 March 2015).
2.    Public Health England. Learning disability profiles
page/1/par/E12000007/are/E09000025             (accessed 26 March 2015).
3.    Emerson E and Baines S. Health Inequalities and People with Learning Disability in the UK: 2010. (accessed 26 March 2015).
4.    Department of Health. Valuing People Now Summary Report March 2009 – September 2010. (accessed 26 March 2015).
5.    University of Bristol. Confidential inquiry into premature deaths of people with learning disability.  (accessed 26 March 2015).
6.    Centre for Disability Research. Estimating future numbers of adults with profound multiple learning disability in England.[user-raw]/11-07/dh_103200.pdf  (accessed 26 March 2015).

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