Coming to hospital if you have a learning disability
Coming to hospital if you have a learning disability and or autism can make some people a bit scared or worried.
We see lots of people who might feel like that
To help you we have a Hospital Passport for you and a family member or carer to complete
We have a Learning Disability Nurse called Tricia who you can contact if you need help before you come to hospital
Tricia can help to make sure your visit to any of our hospitals is a good one
You can contact Tricia on 07713 099156.
Ask, listen, do - a film for patients and families
This film is made by NHS England. It is to help you, your family and paid carers give feedback, raise a concern or make a compliant.
The Hospital Passport
The Hospital Passport has information about you and your carers so that you can make decisions with our staff and get the best help.
What is a hospital passport?
It helps us to make Reasonable Adjustments.
Reasonable adjustments are changes to the way we usually do things
The Hospital Passport can be completed by someone who knows you well.
How do I get a Hospital Passport?
From hospital staff when you are admitted – but this is best done before you come to hospital
Your local Community Learning Disability Service
You can type into the document or handwrite. Typing means you can update it when things change
Don’t forget to tell us if you have any worries about coming to hospital
Visiting our hospitals
People with learning disabilities, autism or both have a right to good health care and support, and to receive it in good time, like everyone else.
The Equality Act is a law that says organisations must listen to everyone, make reasonable adjustments and make sure that people and families do not lose out because of their disability. Reasonable adjustments means we need to do things differently.
What does this mean in practice?
This means that before an appointment either at an outpatient clinic or before an overnight stay as an inpatient, you should know or ask about:
- Flagging: is there a flag on the hospital computer? This tells staff of the disability and will alert them of the need to consider reasonable adjustments. There may also be some comments on the flag to give more information. This will help doctors and nurses know how to best support your family member.
- Health/Hospital passport: bringing this along will help doctors and nurses know the things your family member likes and does not like and make any necessary reasonable adjustments. You should expect to be asked about it especially if the person does not know your family member.
- Who to contact: if needed you can talk about anything that might be worrying you about the visit before coming to hospital. We are working to provide direct contact numbers to our outpatient and pre- assessment clinics staff.
- Getting to hospital: let us know if you need help with that (e.g. taxi cards or hospital transport ). It is important that you keep appointments as these are important for your child and young persons health and help can be available with this if this is hard for you or if you do not drive
When you are at our hospitals you can also expect:
- People in the hospitals to know about learning disability and autism and to be kind and listen to you, your child, young person or adult. We know that not all our staff have direct experience of working with people with learning disability and autism
- Consideration will be given to the waiting environment to find a place more suitable (e.g. if your child, young person or adult finds noisy, busy places very difficult)
More specifically, where your child, young person or adult is coming into hospital as an inpatient (for an operation or other procedure), you can expect:
- Preassessment for a planned admission should take account of all of the reasonable adjustments needed to ensure a successful treatment, including anaesthetics (including likes and dislikes from the hospital passport)
- As the main carer you are actively involved in care and treatment – Decision Making in Adults is a very helpful read
- Reasonable adjustments are made for your child/young person or adult and your needs as a family carer are also considered on the ward
- Post operative recovery and discharge is planned around the child, young person or adult, and you are fully involved (e.g. if your young person wants to leave and it is safe to do so).
Accident and Emergency (A&E)
You should have the same expectations if you visit us A&E.
Ideally you will come with the Health/Hospital Passport.
A&E can be very busy but if we know about your child, young person or adult’s disability, and they need reasonable adjustments we will do our very best.
Where an emergency in patient admission happens following a visit to A&E, although that will be unplanned, the experience should be just as good as if it were planned.
It is important that you feedback your experiences to all hospital staff you come into contact with so that they know and understand your needs. They need to know when they are doing things well and right and also when they need to do things differently.
Learning Disability Nurse Specialist
We have a learning disability nurse specialist who advises our hospitals on these issues, and works face to face with some adults. We have produced this booklet through her work with families. She cannot work directly with every patient but can be contacted - Patricia Handley - If you are having difficulties that you cannot sort out. We want all our hospital staff to have an understanding of the needs of our patients who have learning disabilities, autism or both. We want everyone’s experiences to be positive everytime.
Tell us what you think
We want to give you the best services in our hospitals.
If you tell us what you think, you can help us make our services better. It will not affect the help you get from us.
A compliment is when you tell someone what you are happy or pleased with.
A concern is a worry or something you want to talk to someone about.
A complaint is something you are unhappy about - it's important we know when things are not working well.
Sometimes talking face to face with the people providing the service can help solve an issue straight away.
If you wish to see someone from our Patient Advice and Liaison Service in person please contact one of the telephone numbers given below.
The Royal London and Mile End Hospital: 020 3594 2040
Newham and St Bartholomew’s Hospital: 020 7363 9292
Whipps Cross Hospital: 020 7535 6438
Family and carer: frequently asked questions
We recognise that family carers play a vital and increasing role in our society.
The NHS Constitution and the NHS Commitment to Carers recognise the importance of carers, and the need to ensure you are seen as partners in care, and often experts in the knowledge you bring about your family member.
By working together in partnership we recognise we can deliver an improved experience and better outcomes for your family member and yourself. We have a Carers' Policy: Recognising Carers as Partners in Care.
Frequently Asked Questions
My daughter is being admitted to a ward and she needs me to stay?
We have open access visiting if you wish to stay overnight and continue caring for your daughter. Let staff know in A&E or at your outpatient appointment if it is a planned admission.
I have heard I can get a sleeper chair for an overnight stay, is this correct?
We have two sleeper chairs each at Whipps Cross, Newham and The Royal London Hospital. We will do out best to make one of these available. Occasionally they are already in use. We are looking to increase the number across our sites.
I am happy to carry on with helping my son with his personal care, eating and drinking but I will need a break, can I get help?
We have a Carers' Plan which staff can discuss with you. This will help us by knowing what help you will continue to give but also how you can take care of yourself when you are staying, including breaks.
I have been told I no longer make decisions about my son's treatment as he is an adult, but I know him better than anyone else. How can I be involved?
If someone does not have an understanding (capacity) to make a decision about their care and treatment, the law says we need to involve family. Please be assured that your input is often essential.
I want to speak to the doctor about my daughter's treatment but am unable to visit during ward rounds when the doctor is there, what can I do?
Please speak to the nurse looking after your daughter and ask them to arrange a time for you to meet the doctor. The doctor looking after your daughter will then be able to fix a mutually agreed time. It is vitally important that you are kept up to date with care and treatment if your daughter does not have the capacity to make her own decisions.
I have been told that hospital needs to make reasonable adjustments for people who have learning disabilities. What does that mean?
By law, we need to ensure that people with disabilities get the same high-quality care and the same expected health outcomes as someone without a disability. This means we need to do some things a bit differently, for example, we allow carers to stay overnight, we see people at the beginning of a clinic to cut down on possible waiting, we can use easy read material to help the person understand.
My son has autism and doesn’t like noise. He finds hospitals very difficult, what can I do?
Letting us know in advance can be really helpful. You can contact the lead nurse for People with Learning Disabilities and agree what reasonable adjustments need to be made. You can also complete the Hospital Passport and give this to staff when you arrive.
National guidance tells us we need to put a Flag/Alert on our system that nurses and doctors can see telling us the person has a learning disability. We can add comments to this so if your son has to attend A&E we will know if he has extreme difficulty waiting in a busy area where it may be noisy.
The Hospital Passport is a great way to tell A&E staff what your son's needs are if he has to attend. It can be completed online and updated easily when you need to.