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How to increase health check uptake for people with learning disabilities

A nurse-led team improved health outcomes for people with learning disabilities with the help of local partnerships and individualised care during COVID-19

A nurse-led team improved health outcomes for people with learning disabilities with the help of local partnerships and individualised care during COVID-19

  • People with learning disabilities more than three times as likely to die from an avoidable medical cause of death than those in the general population
  • In Sutton, nurses are working to increase the uptake of annual health checks for about 1,200 service users in the community and in care homes
  • The Sutton team tailors appointments to individual needs through home visits, out-of-hours clinic times, same-day or shorter appointments

People with learning disabilities experience far poorer health outcomes than the general population, yet so much more could be done to prevent

A nurse-led team improved health outcomes for people with learning disabilities with the help of local partnerships and individualised care during COVID-19

  • People with learning disabilities more than three times as likely to die from an avoidable medical cause of death than those in the general population
  • In Sutton, nurses are working to increase the uptake of annual health checks for about 1,200 service users in the community and in care homes
  • The Sutton team tailors appointments to individual needs through home visits, out-of-hours clinic times, same-day or shorter appointments
In one London borough, nurses have been working to increase the uptake of annual health checks for about 1,200 service users in the community and in care homes
Picture: Tim Gee

People with learning disabilities experience far poorer health outcomes than the general population, yet so much more could be done to prevent this and protect them. Not having had an annual health check increases the likelihood of service users aged 18-49 dying by 1.5 times more than in the general population.

Across the borough of Sutton in London, where there are about 1,200 people with learning disabilities, nurses have been working to address these issues in the community and in care homes.

Support for service users anxious about visiting GP practices during COVID

In January, we established a community project to increase the uptake of annual health checks from 26% to 67% by the end of March. The uptake in Sutton did increase and hit its target, and we are now working towards the nationally set 75% goal for the rest of 2021. We have also been assessing the use and quality of health action plans, as well as investigating patient barriers to annual health checks.

People with learning disabilities reported experiencing a lot of anxiety about COVID-19 and the safety of visiting GP practices. Because of this, we set up a service to carry out the annual health check, minus the medication reviews.

Practices were able to refer 20% of their learning disability register. And we established two clinics in the community, as well as offering a home visiting service.

What data about service users’ mortality rates show

  • People with learning disabilities are more than three times as likely to die from an avoidable medical cause of death
  • The average age of death is 23 years younger than the general population for males, and 27 years younger for females
  • Almost half of people with learning disabilities have seven to ten long-term health conditions when they die
  • Preventable medical causes of death are seen in 24% of people with learning disabilities

Source: University of Bristol (2021)

How the Sutton Health and Care team did it

Some service users did not attend appointments due to practical difficulties of leaving their residences. Others were experiencing anxiety about COVID-19 and attending the clinic.

We addressed this by tailoring the appointments to individuals’ needs through offering home visits, out-of-hours clinic times, same-day or shorter appointments.

We also worked hard on reassuring people with easy-read leaflets and information about what would happen at the appointment, as well as encouraging vaccination uptake among this vulnerable group.

Many undetected health issues have been identified during these appointments, including chest crackles, cellulitis, vascular diseases, heart murmurs, hypertension, skin rashes, infected abscesses, obesity, ear wax occlusion and sleep issues.

In these cases, we refer many on to their GP, but other referrals include to dietitians, talking therapies, dentists, continence teams, speech and language teams, social services and safeguarding, to name but a few.

People with learning disabilities and or/autism are encouraged to attend regular, tailored health checks and appointments
People with learning disabilities and or/autism are encouraged to attend regular, tailored health checks and appointments Picture: Tim Gee

Patients are screened for their risk of developing diabetes and hypertension, and we encourage them to take part in bowel screenings, cervical screenings, testicular and breast self-examinations, and arrange appointments for COVID-19 and pneumococcal vaccinations.

We have received fantastic feedback about our service from patients, with the common theme that the nurse is kind, helpful and understanding, and the service is useful and flexible to their needs. As such, our team has been awarded a five-star rating in the Friends and Family Test service report for six consecutive months since April.

The project has been extended to March 2023 and expanded to include increasing GP learning disability registers to support 14-19 year olds, and to deliver annual health checks to those who haven't had one in more than 13 months.

Ten tips to get the most out of a service users’ annual health check

Working closely with public health teams, clinical commissioning groups and GPs

In tandem with this project, a learning disability care home support team was established in September 2020 to support learning disability and mental health residential homes in Sutton during the pandemic. As we know, care homes have been badly affected by COVID-19, and the learning disability population has seen a death rate of up to 6.3 times higher than the general population.

Two nurses on this team cover 47 care homes and work closely with public health teams, clinical commissioning groups, GP surgeries and community teams for people with learning disabilities.

This work has included:

  • Quality improvement of care homes.
  • COVID-19 outbreak management.
  • Infection prevention and control advice.
  • Following up on emergency department attendances.
  • Completing holistic health assessments of residents.

The nurses have also been attending enhanced health in care homes multidisciplinary team meetings.

How team interventions had a positive effect on a resident’s quality of life

By Choonwha Jung, senior care home liaison nurse for the Learning Disability Care Home Support Team for Sutton Health and Care

Following his discharge from the emergency department, the service user was referred to a podiatrist team to fit suitable footwear for his needs
Following his discharge from the emergency department, the service user was referred to a podiatrist team to fit suitable footwear for his needs Picture: iStock

One care home resident with a learning disability attended the emergency department for a red, swollen toe and was discharged with a diagnosis of possible gout and a prescription of Naproxen to reduce the inflammation and pain.

After discharge, we found he was still experiencing pain, had a foot deformity and a blister on one of his toes, and was finding it difficult to wear normal shoes.

After discussion with the local learning disability physiotherapist, we referred him to a mainstream musculoskeletal physiotherapist for rehabilitation.

Following on from our referral, the podiatrist team reviewed him and advised on suitable footwear. This also generated a referral to the orthotic team to review his toe joints and possible correction of the foot deformity.

Beyond these issues, the service user had diagnoses of depression and aggressive antisocial conduct disorder. He is obese and often felt hungry, especially at night. His psychiatrist confirmed that one of the side effects of his medication is appetite increase.

Blood tests, ECG and health checks

Due to the resident’s sensitivity to medication changes, it was decided that drinking plenty of fluid and having good sleep hygiene plan was a better plan than drug changes.

Next, we contacted his GP to request a blood test to confirm the gout diagnosis, as well as an annual electrocardiogram and other blood tests (to test his cholesterol and HbA1C levels), which are recommended as good practice for psychotropic medications monitoring.

We also discovered that his annual health check had been completed only briefly over the telephone. We therefore recommended a meeting to plan improvements to communication and partnership working, and suggested the GP held enhanced health in care homes meetings to review all residents.

Because the service user has hypertension and a family history of diabetes, we explained to him how weight loss would benefit his blood pressure management, potential gout and reduce his future diabetes risk.

He is willing to lose weight and was already making efforts to cut down on sweet consumption and fizzy drinks. We advised him to take up regular swimming, which he loves, when his feet improved. We also referred him to a dietitian for further support.

Although his case is still in progress, our team’s actions have already had a positive effect on his quality of life.

Listen to and involve people with learning disabilities in their care planning process

To improve health and well-being and avoid hospital admission and attendances, we would suggest nurses try to take a holistic approach to any individual’s health issue and dig deeper.

Many people with learning disabilities experience unmet health needs, so do try to listen and involve them in their care planning process, building on their likes and wishes.

Familiarise yourself with the services available in your local area, and work in partnership with them, communicate with all relevant parties as appropriate, and coordinate the care.

Finally, have the courage to stand by your clinical convictions.


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