Health
Information regarding Health for people with a learning disability. This includes hospital care, primary care, local specialist care and more.
The Confidential Inquiry into the deaths of people with learning disabilities, CIPOLD report of 2013 showed extensive inequalities in healthcare for people with a learning disability. It agreed with other reports that people with a learning disability were dying much sooner than thir peers and from preventable causes.
CIPOLD Report in full: fullfinalreport.pdf (bristol.ac.uk)
LeDeR (Learning from Lives and Deaths – People with a Learning Disability and Autistic people) is a programme of work established in 2017. It reviews the lives and deaths of people with a learning disability and autistic people and looks for learning, improvement opportunities, areas of inequality and areas of good practice. Funded by the NHS it looks to improve the lives and healthcare of people with a learning disability and autistic people. LeDeR – Home
Essex Carers Network sits on the LeDer panel to consider the findings from those reviews, make recommendations, ask questions and note good practice.
NHS - learning disability
The NHS has a page on their website with information about learning disability. There are also links to many other pages from this.
Online Information Pack - DNACPR (
NEW for 2024 this pack with videos, easy read and a printable version talks about DNACPR.
Learning Disability England and Turning Point have published a free, interactive, online information pack about DNACPR (Do Not Attempt Cardio Pulmonary Resuscitation) recommendations. The information pack is for people who have a learning disability, people who work in healthcare, or provide support to people with learning disabilities. Turning Point and Learning Disability England worked with self-advocates, family members, support workers and experts to create the pack which includes: a checklist on what the doctor should tell you, video clips of people who have successfully challenged inappropriate DNACPRs and a poster with some ‘Top Tips’ on DNACPR from people with lived experience that can be printed out. The information pack is available here: https://mytp.me/dnacpr-info
If you have any feedback about the resource please email info@turning-point.co.uk
Constipation in people with a learning disability
NHS England have a page with information for carers about constipation and its dangers for people with a learning disability, including easy read materials and materials to share.
Health - Annual Health Checks
People with a learning disability aged 14+ should be offered an Annual Health Check with their GP or a nominated health care professional. This should also include receiving a Health Action Plan with information and guidance about their health needs.
Ageing Well with a Learning Disability - Toolkit for Family Carers
Essex Carers network have been working with Essex County Council and an independent consultant to coproduce a toolkit for family carers that supports them to think about Ageing Well with a learning disability for their loved ones.
The toolkit has lots of useful information and can be navigated with search options for specific areas. It helps with checklists and tools to assess whether you need to seek extra support or medical advice and talks about the reasons why people with a learning disability face health inequalities which mean they are statistically more likely to die early from a preventable cause than the general population.
We welcome your feedback about the toolkit as we are want to make sure families find it helpful.
NHS - LeDer
LeDeR Learning from the Live and Deaths of people with a learning disability and autistic people.
LeDeR reviews deaths to see where we can find areas of learning, opportunities to improve, and examples of excellent practice. This information is then used to improve services for people living with a learning disability and autistic people.
ELDP - Essex Learning Disability Partnership
The Essex Learning Disability Partnership (ELDP) is a partnership between Hertfordshire Partnership University NHS Foundation Trust (HPFT) and Essex Partnership University NHS Foundation Trust (EPUT). The partnership is responsible for all NHS learning disability community and inpatient services across Essex.
Our recent Podcast with Diane Henley highlighted the services of the Way In team who deals with the initial referrals to the service.
Mid and West Essex Learning Disability Service
Essex Learning Disability Partnership Way In (referral service)
To refer in to the Essex Learning Disability Partnership service to access specialist health care support you can complete their online form. This can also be done by family, carers and practitioners.
North Essex Learning Disability Service
for information from the South Essex Learning Disability Service
STOMP(Stopping over medication of people with a learning disability, autism or both)
STOMP(Stopping over medication of people with a learning disability, autism or both)
The Challenging Behaviour Foundation, a charity for people with severe learning disabilities whose behaviour challenges have a medication pathway information page on their website. This explains the pathway to prescribing psychotropic medication. There website also has lots of other valuable information.
STOMP - Stopping the over medication of people with a learning disability, autism or both
STOMP is a project in England to stop
the over use of psychotropic medicines.
STOMP stands for Stopping The Over Medication of children and young people with learning disability, autism or both. It aims to stop the overuse of pychotropic medication for children and young people.
STAMP stands for Supporting Treatment and Appropriate Medication in Paediatrics. This aims to make sure that children and families can access other treatment and support when children display behaviours that are challenging.
NHS - Personal Health Budgets
A personal health budget is an amount of NHS money that is allocated to support your health and wellbeing needs. If you’re eligible for it, you (or someone who represents you), will work with your local NHS team to plan how you spend the money and get the care you need.
STOMP/STAMP
STOMP stands for Stopping The Over Medication of children and young people with learning disability, autism or both. It aims to stop the overuse of pychotropic medication for children and young people.
STAMP stands for Supporting Treatment and Appropriate Medication in Paediatrics. This aims to make sure that children and families can access other treatment and support when children display behaviours that are challenging.
Gov.uk - Lasting Power of Attorney
A lasting power of attorney (LPA) is a legal document that lets someone (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help them make decisions or to make decisions on their behalf. This can be for property & financial affairs, health & welfare or both. The person has to have mental capacity to agree to a lasting power of attorney. This link takes you to the Gov.uk website for to make, register or end a Lasting Power of Attorney.
Please take advise if you are unsure if this is the option for your family.
Constipation - advice for people with a learning disability
The NHS have produced a leaflet about Constipation. For people with a learning disability, constipation can cause complications if left untreated and can lead to death.
Buzzy®UK -for pain relief
Some families have told us about gadgets to help with pain relief, particularly for injections.
(PLEASE NOTE : Essex Carers Network do not recommend any organisation or device, but provide information for you to investigate. Other devices and organisations may be available)
Buzzy® has been used to block pain from over 31 million needle procedures. Just like cool running water soothes a burn, Buzzy uses a patented combination of cold and vibration to replace pain with temperature and movement.
Health - Integrated Care Systems - ICS
Previously CCGs (Clinical Commissioning Groups), Essex now has 3 different ICBs (Integrated Care Boards).
- SNEE Suffolk & North East Essex ICB
- MSE Mid & South Essex ICB
- HWE Hertfordshire & West Essex ICB
Constipation - Information for carers
Constipation can be the cause of early preventable deaths for people with a learning disability.
NHS England has information for carers to support their loved one to live healthily and avoid or treat constipation.
Vaccination for Pneumonia-Meningitis-Sepsis -An Easy Read Guide
This resource is an easy read guide to what is usually called the pneumococcal vaccine. It is a vaccine for Pneumonia, Meningitis and Sepsis.
In Essex people with a learning disability are now entitled to a Pneumococcal vaccine.
The link gives further information from the NHS website
Are you protected – the pneumococcal vaccine – an easy-read booklet (January 2025 update)