Going into hopsital easy-read guide

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submitted on 31/3/2011

Here is an easy-read guide for going into hospital, produced by the Royal Berkshire NHS, but suitable for general use. Guide (1013.7 KB)

Ask for a learning disability guide

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submitted on 8/3/2011 by Loo at A&E

I work in a busy A & 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.

Communication book

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submitted on 7/2/2011 by Laura Higson

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 & meds times/doses & method spoon/tablet/via gastro etc, bedtimes etc; how the child shows they're in pain/distress or happy/content.

Free hospital communication resource

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submitted on 2/2/2011

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. www.communicationpeople.co

General Hospital Care – new resource

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submitted on 27/1/2011 by Janet Cobb

General Hospital Care for People with Learning Disabilities is a new publication for health professionals supporting people with learning disabilities in a hospital setting. More info

PALS are there to make it easier for you

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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 e.g. suggest 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 !

Acute liaison nurses

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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 for 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.

Qualified learning disabled nurses

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Some hospitals have Nurses who are qualitfied to work with learning disabilities, so do ask before hand.

Epilepsy

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

One 2 one nursing - a special

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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.

Your own bedroom

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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.

Single room

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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.

Blow up mattress for you.....

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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.

Put a notice up next to the bed - laminated

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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 follow the Roos.

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 e.g 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 have produced a very good template passport for hospital stays at www.easyhealth.org.uk

Yes, we do understand!

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

Communications aid vocabulary

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Prepare your communication aids vocabulary before going in to hospital to make sure you have the appropriate words for the situation Ie my plaster is too tight.

Making a complaint

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

Communication book/passport

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