Bexley Mencap's contribition to the NHS 10 year plan

Bexley Mencap have kindly been contributing their suggestions to the NHS 10 year Long Term Plan. People with learning disabilities have been selected as one of the five priorities. They think this is fantastic and they feel everyone should take this opportunity to have their say about their own health. I met up with two groups at Bexley Mencap, first it was the Carlton Road group and then later the health group. Here's the groups suggestions and I think these are absolutely spot on and a brilliant start to an historic opportunity for people with learning disabilities.

 

1. Communication

• Everything that is written for everyone, there should ALWAYS be an easy read version.
• Every hospital and GP surgery should have copies of Book Beyond Words.
• Speak to the person first, not the carer.
• Staff should be trained in basic Makaton or Sign Along.
• Healthcare staff should make everything as predictable as possible for the person. Explain in easy English what's about to happen, as it happens and what you have to do afterwards. Don't just say it once, please check if the person understood everything.

 

2. Training

• All healthcare staff should receive awareness training about people with learning disabilities.
• The more often healthcare staff come into contact with people with learning disabilities, then the more training they should get.
• People with learning disabilities, their families and training staff should develop and deliver the training.
• The training should be an e-learning, it should be face to face.
• Training about how to communicate.
• Reasonable adjustments should be included, like what is a hospital passport, why they are vitally important and how to use them.
• Training should involve the good and bad experiences of healthcare.
• Should show the real life of people with learning disabilities and autistic people.
• Knowing about the health conditions that are more common in people with learning disabilities - like epilepsy
• 'Black books' in Bexley we use personal health profiles - it keeps a record of every health appointment - so you keep a history of your health needs.
• Repeat the training every couple of years.
• Go back and check what they have learnt - quality checkers

 

3. Going to hospitals

• We have a much better experience of hospitals if they

      have a learning disability nurse.

• Better communication with the person, communicating at the level of the person.
• Good support is based on understanding things much better, understanding me.
• Much employ doctors with experience of people with learning disabilities.
• Use different ways to inform people of hospital appointments – easy read, telephone message, pictures etc.
• Families and carers should be able to stay for the whole time in hospital.
• See the same doctor and same nurse.
• Talk to the person first – should be person centred.
• Visiting A&E – go to the front of the queue.
• Waiting too long causes anxiety – need to change this.
• What good experiences have we had :
• Physiotherapist's – speak to me first, they always       explain what’s happening, I know what is expected of me.
• Using easy read instructions or a video showing the person what exercises they have to do. 

 

4. My G.P.

 

• Receptionist's need training about being polite.
• GPs need to speak to you kindly, going the that extra mile.
• Annual health checks and are very important. All GPs should offer annual health checks. 

 

5. Staying healthy

• Need easy read information and in pictures how to stay healthy.
• Support and learning about what's in a healthy diet.
• There should be slimming groups for people with learning disabilities.
• Know more about calories, vitamins etc.
• Getting weighed regularly and help to understand what is a good weight?
• More exercise classes that people with learning disabilities can join.
• Free or reduced prices to join a gym.
• Running groups are free and you get to meet other people.

 

6. Reasonable adjustments

• Being offered the first appointment.
• Extra time - offer a double appointment.
• Everything in a way that the person understands - easy read, pictures, Makaton.
• Understanding the importance of hospital passports.
• Autistic people - check of the person has sensory processing problems and make adjustments - like dim the lights.
• Understand that you can't see all disabilities.
• Don't use jargon!
• Have a quiet room.
• Understanding the importance of having someone to speak up for you. This makes a real difference.
• If people are scared of doctors, dentist and nurses perhaps they can be asked to wear normal clothing.
• Have a face to face conversation with the receptionist rather than a machine.

 

 

7. Screening

 

We believe that far much should be done to make sure that screening is offered and followed up for people with learning disabilities, include:

• Breast cancer
• Testicular cancer
• Cervical cancer
• Bowel cancer

Don't just try once and make sure that its understood by the person.

 

 

8. Chemists

• All prescriptions and information should be in easy read.
• Giving an easy read version isn't good enough - they must check that the person understood what was said.
• Make sure the tablets come in the same size and colours each time you pick up a prescription.

 

9. Support workers

 

• Support workers receive the least training but they spend the most time with the person. So they should be taught above recognising illness.
• Should know how to prevent the flu or a cold.
• How to recognise CONSTIPATION.
• Its really important that they receive enough regular training.

 

 

10. Stopping people from dying earlier

 

• Training, training, training for all NHS staff and support workers.
• There is always a reason for behaviour - its up to the NHS to find out the reason.
• Just because a person has a learning disability doesn't mean that they wet themselves - it might be a UTI or cancer.
• Need far more research into the top causes of deaths among people with learning disabilities, why are the causes different from the general population and what can be done.
• Better understanding of Sepsis - which can be treated if you see it earlier.  

 

 

11. Get the flu jab

 

Make sure everyone gets the flu jab!

 

12. Being listened to

 

• You need to make the complaints system far easier to understand and listen to the person. Don't think they might make it up or get confused because they have a learning disability.
• Make people with learning disabilities aware that they can make a complaint.

Bexley Mencap would like to say thank you to NHS England for listening to them and being part of improving care.