Learning Disability Today
Blue Sky Offices Shoreham
25 Cecil Pashley Way
Shoreham-by-Sea
West Sussex
BN43 5FF
United Kingdom
T: 01273 434943
Contacts
Alison Bloomer
Managing Editor
[email protected]
[email protected]
How we are improving health outcomes at SeeAbility
We have shared Caroline’s story, which was featured by LDT on their campaign page. We are also encouraging people to contact their MPs and continue to make sure that people with learning disabilities are not forgotten in the new NHS plans by responding to NHS consultations.
Scott is our Head of Engagement. He leads a team of people with lived experience, and his blog has really taken off on social media. We are also supporting Learning Disability England’s ‘Good Lives’ framework, which has just been relaunched with a new chapter on health.
Internally, we are focused on ensuring that people access their annual health checks and take on board actions from their health action plans. More holistically, we are helping people’s wellbeing and mental health through taking part in initiatives such as STOMP to address overmedication with antipsychotics, or actions to reduce loneliness that can have such a long-term effect on mental and physical health. This is part of our Great Expectations Framework of delivering what really matters to people we support.
We also fundraise for programmes of work that can drive societal change. In health, we are best known for our work to remove barriers to eye care, as sight problems are the most common comorbidity that people with learning disabilities face. While vision issues may not be life-threatening (generally), experiencing sight loss is life-changing for people with learning disabilities, and everyone deserves an equal right to sight.
What changes to NICE/SIGN guidance would you like to see?
The LeDeR learning from lives and deaths report is such an important resource in understanding what health issues people are dying from and what guidance needs to be particularly prioritised amongst the suite of advice from NICE/SIGN. LeDeR has consistently pinpointed cardiovascular disease, respiratory illnesses such as pneumonia, cancers and epilepsy as factors leading to avoidable deaths. These areas should at the very least be prioritised, so clinical guidelines include both vigilance and advice on supporting people with a learning disability. We need to see the delayed 2024 LeDeR report published. It is vital evidence, even for making the case for ensuring people with learning disabilities don’t miss out in future Covid vaccination programmes, which is a very current risk. We are unsure why it has been delayed.
Because we have also developed our expertise around sight loss and eye health conditions, we have sometimes been able to influence NICE clinical guidelines, but much more needs to be done to ensure that each NICE clinical guideline considers learning disability as a matter of course.
It would be great to see how the guideline process could be more influenced by people with learning disabilities themselves, so that when published, they are more accessible and informative to them and can be used to advocate for better standards of care.
Rigid processes for responding to consultations provide barriers to people with lived experience contributing. While of course the guidelines must be evidence-led and involve clinical experts, it feels like practice guidance then stays in clinical circles and is not well known.
There are some exceptions to this and it is good to see NICE has undertaken work within social care as its remit has expanded, for example guidelines on treating and supporting people with behaviour that can challenge.
What could the sector itself do better to improve health inequality?
We would like to see the new NHS 10-year plan have a really strong focus on learning disability. We are looking for a revival of understanding of what is possible and leadership for this within government and in local areas, so everyone understands the importance of addressing the current gap. The last government strategy for people with learning disabilities was 15 years ago. Strategies go only so far, but they give a strong signal that people with learning disabilities are a priority and that these health inequalities are unacceptable.
As providers, it is often our colleagues who know people best and notice the very first signs of deterioration. However, so often, there are barriers to getting the support you need from NHS services, long waits for support and advice, or a lack of continuity of care. Particular examples are access to crisis mental health support, speech and language, and wheelchair services.
It’s important to understand how care is commissioned and how someone may be supported by their existing support team if they have an emergency or planned admission to hospital. Social care teams may be the only advocate someone has, but the agreed amount and type of support doesn’t account for the fact that providers will then need to arrange additional cover to ensure that person is supported during their stay.
Ultimately, it is about listening to each person and those who know them best, and ensuring they have equal treatment and access to the care they need as much as anyone else.
Do you have any other ideas or innovative solutions to help prevent preventable deaths?
Successive LeDeR reports have pointed to good practice, and the recent Learning Disability England Good Lives Framework contains some really helpful examples. That may mean targeted programmes too that prioritise and do things differently than what standard services can offer – even with a reasonable adjustment. Our work in special schools, which brings eye care to the children who are most at risk of having a sight problem, shows how this targeted health work can be done. In the vast majority of cases, this service is an alternative to hospital eye care and prevents avoidable sight loss.
The abandonment of the Annual Health Check target is such a disappointment because, although not perfect, without that impetus, we may see fewer people accessing them and experiencing those checks that could pinpoint a serious problem with their health.
