Ideas forum: response from My Life, My Choice

What changes to NICE/SIGN guidance would you like to see?

It’s less about change and more about the guidelines actually happening or being enforced, making sure everyone acts on them and that there are enough support staff, nurses, doctors, and they all are working to the same plan. They could also include the big areas from the NHS 10-year plan, like:

• New technology and how people can be supported to use it, and not just be confused by it.
• How social care and healthcare can work together better in the community.

There could be more to ensuring people are flagged in the first place and proper ways of giving feedback, whether good or bad, than just an Easy Read form in the post.

What could the sector itself do better to improve health inequality?

There are still many communication issues. Easy Read is a good start, but there needs to be much better overall information sharing in health and social care.

Make sure there are good projects in every area to get people on a healthy path in every area!

People with a learning disability should have more power over how their data is used and shared, and know that they or their carers/family will not have to constantly repeat their health history to every medical professional.

Regular checks in when unwell, ideally face to face, if not online, only a phone call as a last resort to make sure people are ok.

Finally, at discharge, there is a chance to offer at least an online meeting to discuss the person’s good and ‘what could be better’ experience, or if they lack capacity, their carer or family.

Do you have any other ideas or innovative solutions to help prevent preventable deaths?

1. Health and Happiness – a care board-funded project in every area that encourages people with a learning disability to set personal mental and physical health goals, to improve their health outcomes.
2. Flag us when unwell – one electronic system of data that can share information across health providers and maybe even social care. Plus, the electronic flag in every trust. Also the system should develop an accessible app that allows people with a learning disability or their carers, to check, record and question their key health needs and data i.e. blood pressure, medication etc.
3. Help while we wait – an Integrated Neighbour Team in every care trust to focus on making sure we can check on people who are waiting for appointments and treatments, and that others are getting their health checks.
4. Learn for next time – a guaranteed online slot (at the very least) with a professional involved in treatment afterwards, where our feedback will be properly responded to and shared for learning with our local care board.

My Life My Choice

My Life My Choice is a self-advocacy organisation. Our vision is a world where people with learning disabilities have choice and control over their own lives and are treated without prejudice. It is important to us that we are independent and user-led – all 15 of our trustees have learning disabilities.

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