Health and medical


2 Hospital stays

Communication book/passport

I wouldn’t dream of going in to hospital without Ira’s personal communication passport so important for hospital staff to read likes/dislikes and needs etc. Really important to take your communication aids with you too!

Making a complaint

If you are struggling in the hospital it is worth complaining. Go to the Patient advice liaison services and they will help you.

Communications aid vocabulary

Prepare your communication aids vocabulary before going in to hospital to make sure you have the appropriate words for the situation, such as "My plaster is too tight."

Yes, we do understand!

Sadly we find that hospital staff tend to assume that children who cannot talk cannot understand! Do try to put them straight.

Put a notice up next to the bed - laminated

We have developed a simple kit to facilitate basic communication in hospitals. The first, vitally important, item is a prominent personalised notice introducing the patient and describing their communication strategies. For example: Hello. My name’s John. I’m 15 and I’m interested in music, cars and football. I understand what you say, but I can’t talk.

I am not deaf.

I try to nod for "yes" and shake for "no". If that isn’t clear, please hold up my yes/no card and I’ll look at or hit the one I want.

To ask for things or to tell you what’s wrong I point with my hands or eyes to my communication board. Please hold it up where I can see it.

Please ask one question at a time and wait for my answer before moving on.

Thanks for being patient.

We print two copies of the notice in large print on bright paper, one for John’s hospital file, and one, which we laminate, to go above John’s bed along with a really positive photo of John cheering on his team at the footy or using a computer. This is important as we have found that staff are often totally unable to separate the effects of illness from the effects of disability. Many assume that a person who is flat out with a temperature of 41C, and who has been given large doses of morphine, is never any more responsive.

We include the person’s age on their card to avoid babying. Mencap has produced a very good template passport for hospital stays at www.easyhealth.org.uk 

Single room

Jack is very noisy and hard to control so we always request a single room. We don’t always get it but more often than not we do.

Your own bedroom

Before going in to hospital call the ward matron and explain your needs. Usually you can get a separate room and if that particular ward doesn't have an available room they can give you a single room on another ward. Another route to your own bedroom is by asking the doctor to call the bed manager to arrange a single room for you.

One 2 one nursing - a special

At the ward matron and doctor’s discretion they are able to assign you one to one nursing support, they call it ‘a special’ – you will need to ask for this, they don’t think to offer it.

Epilepsy

There are specialist epilepsy nurses who may be able to help you. To find out more contact the Sapphire Nurses scheme.

Qualified learning disabled nurses

Some hospitals have nurses who are qualified to work with learning disabilities, so do ask beforehand.

Acute Liaison Nurses

Acute Liaison Nurses are based in hospitals. Some make home visits before hospital admissions. They help plan hospital admissions. They will support and facilitate for you the whole process including liaising with doctors and nurses. They are permitted access to the medical notes. They also provide support and advice to carers. Make sure you phone beforehand to access help from them.

PALS are there to make it easier for you

John does not like to be in crowded areas and finds it uncomfortable to wait in long queues in hospitals. If you look after someone with similar issues then call the Patient Advice and Liaison Service (PALS) office before the appointment is due and explain the needs of the person you care for so they can make some arrangements such as a quiet area to wait in or move you up the waiting list when you arrive so you can be seen quickly by the consultant. PALS is there to help you so use it!

Free hospital communication resource

The Hospital Communication book is a free resource you can download to use to help people to communicate when they visit or stay in hospital. 

Communication book

Having worked in a hospital and looked after children with learning disabilities, I found it really useful when parents brought in a good communication book. Things that were useful were names of friends/pets/siblings; favourite activities/sports/school subject/football team; normal daily routine, including feeds and meds times/doses and method spoon/tablet/via gastro etc, bedtimes etc; how the child shows they're in pain/distress or happy/content.

Ask for a learning disability guide

I work in a busy A and E Department and with a child of my own with LDs. I understand how distressing it can be for someone with a learning disability. Always ask, if attending hospital, if they have a learning disability guide for the patient to help their progress and make it less distressing. We have one that is all in Makaton.

Hospital flagging system

I have put the young man I care for's name on our local hospital flagging system. This means if he goes to A&E or is admitted to a ward the system will notify the learning disability liaison nurse which will enable them to support him and his carer. This is for people 16 and over.

Blow up mattress for you

Hospitals often do not provide a bed for a parent carer to stay over - take a blow up air bed and sleeping bag. No need to spend the night on a chair.

Pack your bags

We end up in hospital a lot over winter. I find it helps to have a hospital bag packed and ready to go. Once discharged, I repack the bag with pads/wipes/spare clothes/pyjamas etc. That way, if there's a late night rush in an ambulance, I am always ready.

Don't forget the siblings

When Hugh's in hospital we always make sure we make a fuss of his brother too. We hide toy cars or sweets in Hugh's hospital bed or under his pillow and say he's bought them for his brother.

Book recommendations

Read books with your child to prepare them for their hospital stay:

Keep it positive

Whenever you speak of doctors or hospitals with your child, talk about them in a favourable way, describing how they make people feel better.

Share your tips and feedback

We'd love to hear your tips, practical suggestions and feedback.
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Using these tips

These tips have been contributed by members of our online community. We hope they will give you some ideas to try, but if you need further help why not post a question to the community or talk to one of our community advisors. If you have any concerns about your health or the wellbeing of someone you are caring for, please consult a doctor or qualified professional.