Do you or your child have a heart problem? Do you or your child also have a learning disability or autism? Do you look after someone with a learning disability and heart problem? This page is for you!
Learning Disability Forum (LD Forum)
You are not alone! The Learning Disability Forum is a group of patients, carers and family members, and charities who want to improve the experience of people with learning disabilities who need to come to hospital. They want to share experiences and find understanding from others who truly get it!
They meet once a month via Zoom at 7pm.
What have they been doing?
Open day for adults with learning disabilities
On 15th June 2024 they had an open day for people with learning disabilities and autism. This was held at Liverpool Heart and Chest Hospital. People with learning disabilities were able to visit different parts of the hospital. They were in small groups and had a makaton tutor with them. Parents and carers were able to listen to talks from experts. The event was supported by local and national charities. Watch the video of the event here Learning Disability Open Day
Reasonable Adjustments Checklist
They have developed a checklist of ‘reasonable adjustments’. This is a list of things that they think will help improve the experience of patients and families when they come into hospital. Members of the LD Forum have been visiting hospitals to check if they can make these changes to help people.
(Can we post the checklist here)
Distraction bags
They helped to provide bags of ‘distraction’ toys to help entertain children and adults who need to come to hospital for tests or treatment.
How do I join the LD Forum?
If you would like to join the LD Forum – they would love to hear from you. Please fill in the contact form below.
Form should have a subject title (LD Forum) and be sent to northwestchdnetwork@alderhey.nhs.uk
Additional Information
What to expect if you need to come to hospital
We will listen to you
We will listen to you and your family and the people close to you. This is so they know how to care for you. They will want to know all about you and will ask if you have a health passport. If you don’t have one they will help you fill one in. Here is one to look at: Health Guides: Hospital Passports, Summary Care Records And Flu Jabs | Mencap
Making decisions
From the age of 16 years you can make your own decisions about your health. We will help you to understand what is happening and why. We will give you information that is easy to understand and will spend time with you and the people close to you. We will check that you can make the decision for yourself. If you can’t then the doctors may need to make a decision for you. They will always listen to what you have to say and they will speak to the people who know you. This is called the Mental Capacity Act. Click here to find out more: Mental Capacity Act – Easy Read.pdf
Reasonable Adjustments
We will make changes to the way we do things so that you are not worried or anxious about anything. Click here to read more about what this means: About reasonable adjustments | Mencap | Easy Read
Learning Disability support in hospital
Our hospitals have learning disability teams to help you. This includes access to a learning disability nurse. If you don’t know who this is – ask the nurse in charge on the ward who this is. Some also have a learning disability champion on the wards and many have been taught basic Makaton Sign Language. Ask the staff who this person is. They can provide ear defenders if you are finding the noise too loud. Some hospitals have quiet areas that you can go to if you are feeling overwhelmed and need help to calm down.
Easy Read Information
We will provide easy read information for you to help you understand.
Here are some easy read leaflets
Having a CT Scan (Easy Read) 14ER0021 CT scan copy (lhch.nhs.uk)
Having a Heart Operation (Easy Read) 16ER0065 having a heart operation (lhch.nhs.uk)
Having an ECG (Easy Read): 14ER0019 ECG copy (lhch.nhs.uk)
Having an Echo Heart Scan (Easy Read): having an ultrasound scan er001 (lhch.nhs.uk)
Learning Disability Register
Are you on your learning disability register at your GP surgery? This will help you get extra support when you visit your GP. Find out more here: Everything you need to know about the learning disability register | Mencap
Hospitals
Alder Hey Childrens Hospital
Manchester Royal Infirmary
