>>Aaron: Hi my name is Aaron Oxford and I work at NHS England.
We run the NHS England Learning Disability and Autism Advisory Group.
This is a group of people with a learning disability, autism or both, and family carers.
The advisory group tells NHS England about the experiences and opinions of people with
a learning disability, autism or both. We had a meeting to talk about the care people
get when they have a particular illness, like diabetes or epilepsy. This is called a care
pathway.
(Reasonable adjustments for care pathways) If you have a learning disability or autism
then you might need the care pathway to be a bit different, so it works for you. This
is called making reasonable adjustments. These could be changes to how long your appointment
is, to your treatment or the information that you get.
The advisory group gave us lots of ideas about reasonable adjustments to care.
We agreed that reasonable adjustments should be made around a person and not around a condition.
This is because everyone is different. Doctors need to be able to offer long enough
appointments so that reasonable adjustments can be made.
We need to give services examples of how they could make reasonable adjustments. This could
be using videos or stories of good adjustments that other places have already made.
It is too hard to make a full list of reasonable adjustments because everyone has different
needs. Information about what reasonable adjustments
people would like should be included in summary care records and on health passports.
(Make information accessible) Information should be accessible and in lots
of different formats so that it is accessible for everyone.
Speak to the person and not to the carer or family. Make sure the family or carer also
understands what has been discussed. Don’t use acronyms when explaining things.
If you need to, make sure you explain what these mean.
(Checking understanding is important) Sometimes people say they understand when
they don’t. Sometimes, people understood in the appointment
and then forget later. One way you can check someone has understood
is to ask people to repeat back what you have said.
Writing things down during and appointment can also help people to remember.
Be aware that people may be embarrassed to ask for help, which could be worse for men.
(More training is needed for staff about learning disabilities and autism)
Staff need to be more aware of learning disabilities and autism, and additional conditions people
might have. When staff are trained about autism and learning
disabilities this would be a good time to talk about reasonable adjustments.
Awareness training would also be a good time to remove the idea that someone who has a
learning disability won’t do things like smoking or drinking too much alcohol.
(Everyone should feel welcome and included at support services)
Sometimes support groups aimed at everyone may not have the knowledge or know how to
include everyone properly. For some conditions, there may be enough people
to make a separate support group for people with a learning disability or autism.
(Things people said about diabetes care) Give simple messages to people about how they
can prevent and manage their diabetes. Be sensitive about the words you use around
diabetes. For example some people can be sensitive about the word fat. Instead you could talk
about different ‘lifestyles’ increasing risk of diabetes.
Some people can find it hard to understand what they can and can’t eat when they have
diabetes. This could result in an eating disorder. Doing a check for eating disorders would be
helpful. Be clear about what is healthy and what is
not healthy and make sure staff are trained on this too.
It would be useful to have a place that people can go to get information and advice about
diabetes if they have a problem – like an accessible website or helpline.
Have a smaller choice of things like diabetes pens and the same rules about paying for things.
Making things the same around the country would be less confusing.
(Things people said about care for dysphagia- difficulty swallowing)
People often don’t know what dysphagia is. Using ‘difficulty swallowing’ would be
more helpful. It can be dangerous when people don’t know
what dysphagia is! People might offer someone with dysphagia things to eat which they won’t
be able to swallow. This can happen anywhere including in hospitals
and secure units. To help stop this happening it is really important
that staff read care plans. More training is needed for health professionals
about dysphagia. Symbols or coloured beakers could help people
know that a person has dysphagia. This would work best if it was the same across the country.
(Things people said about epilepsy care) The language used around epilepsy can be scary,
so using simple language to explain things is really helpful.
More awareness is needed for the public about the signs of epilepsy. A campaign like the
stroke FAST campaign would be good. Teaching people more about epilepsy will help
to make people less scared of it.
(Things people said about heart disease) People need to me more aware of heart disease.
Publicity and education would help. The NHS should concentrate on stopping people getting
heart disease by encouraging people to live healthy lifes tyles. They should teach children
about this in schools.
(Things people said about autism) At the moment the work on care pathways focuses
on adjustments for people with a learning disability. We asked what adjustments would
help for people with autism. GPs should know when their patients have autism.
But they often don’t. If GPs knew more about autism it would really
help to improve support for people with autism and diabetes.
The ‘black and white thinking’ that is associated with autism could mean that a diagnosis
of diabetes could leave someone very stressed or with an eating disorder.
People with autism can find it hard to explain their symptoms. Diagnoses normally only happen
after a crisis, and then people can struggle to understand what the diagnosis means for
them. (So what next?)
Thank you for all these ideas. NHS England is using what you have told us
to make care better.