Going into hospital
Going into hospital can be a worrying time for anyone. But it can be particularly worrying and stressful for someone with a learning disability.
If you or the person you care for needs help or advice while in hospital, ask a member of staff or contact the hospital's Patient Advice and Liaison Service (PALS), or the Mencap Direct helpline on 0808 808 1111 (Monday to Friday, 9am to 5pm).
The following advice will help to make a hospital stay go smoothly.
Before the hospital stay, make time to talk about what will happen so that you or the person you care for understands as much as possible.
The hospital or GP may have given you printed information to go through, but simple explanations such as this easy read description of what happens when you go into hospital (PDF, 846kb) can also help.
Before going into hospital, make sure the hospital staff know about your disability and what reasonable adjustments you need.
This should be something the GP includes in their referral letter – ask them about this to make sure.
You or your carer can ask the GP if you can see all the letters written about you.
Find out about accessing medical records on someone else's behalf.
If you're being referred to hospital by your GP, you can ask the GP to check whether the hospital has a learning disability liaison nurse.
This is a specialist nurse who supports people with a learning disability while they're in hospital to make sure they get the care they need.
It may be possible to choose a hospital that has learning disability liaison nurses if other hospitals do not have this service.
It's important that the nurse meets you, and your carer if appropriate, as soon as possible after you arrive at hospital or, ideally, before a hospital stay.
This is so the nurse can find out as much as possible about you and understand the help you may need while in hospital.
A healthcare passport is a document about you and your health needs.
It also contains other useful information, such as your interests, likes, dislikes and preferred method of communication.
Healthcare passports can be very useful if you have to go into hospital. As well as giving hospital staff details about your health, the other useful information can help staff make you feel more comfortable.
You may be able to get a healthcare passport from community learning disability teams, your GP or your hospital.
Easyhealth has more information about healthcare passports.
In 2016, the Accessible Information Standard was brought in for health services to help people with a disability to communicate their needs.
It's important to make sure all staff involved in your care know how to communicate with you.
Hospital staff should ask you or your carer how you prefer to receive information – for example, through talking, or in easy read format. They should make a note of your choice and let other staff know, so you get information in the right format.
You or your carer should also tell the nurses if you need help with eating or drinking, or if you're in pain.
If you find it hard to understand what the doctors or nurses are saying, ask for help.
Carers can help make sure that doctors and nurses know about communication and that it's written in the person's medical notes.
It may be possible for carers to stay in hospital overnight with the person they care for.
While in hospital, the doctors will need to have a consent (permission) form signed before they can perform an operation on someone.
If you're over 16 years old, you can usually give consent yourself. If you're under 16, consent is usually given by a parent or someone with parental responsibility.
The doctor must explain what's involved in the treatment, why you need it, how it will help and if there might be any problems with it. This is so you have all the information you need to decide.
The doctor should explain everything in a way you find easy to understand, and you can ask as many questions as you like. You can also ask a carer or friend to help you.
Lack of capacity
A person who cannot understand what they're consenting to may lack capacity to make decisions. They may still be able to make decisions at other times.
A deputy is a person who helps someone make decisions or makes decisions on their behalf. A deputy is appointed by the Court of Protection if the person concerned lacks the capacity to make a decision. A deputy can be the person's family member, friend or member of staff.
A deputy can make decisions on health and welfare, as well as on financial matters. They'll come into action when the court needs to delegate an ongoing series of decisions, rather than one decision.
But deputies cannot refuse consent to life-sustaining treatment.
No one can legally give consent on behalf of another adult who has capacity. But doctors may treat an adult without consent if they lack capacity, provided the treatment is necessary and in the person's best interests.
Lasting Power of Attorney
In this case, someone who knows the person best may be consulted by the doctor or another healthcare professional, particularly if they have Lasting Power of Attorney to help make medical decisions on the person's behalf or if they're their "deputy".
Young people or adults with a learning disability may never have had capacity and are therefore unable to agree to a Lasting Power of Attorney.
If the person already has a Lasting Power of Attorney appointed, they normally will not need a deputy as well.
Read more about being a deputy on GOV.UK.
Asking questions for the person you care for
You may want to ask the following questions on behalf of the person you care for:
- What will the treatment involve?
- How will the treatment improve the person's health?
- What are the benefits of this treatment rather than others (if there are any)?
- How good are the chances of success?
- Are there any alternatives?
- What are the risks, if any, and how serious could they be?
- What happens if the person does not have treatment?
GOV.UK also has more about making decisions on behalf of someone.
Lots of people are afraid of needles, and needles may cause added distress for someone with a learning difficulty.
With blood tests, intravenous fluids and medication injections, needles can be hard to avoid in hospital.
If the person you care for gets upset by needles, ask if the hospital has anaesthetic cream that can be used to numb the area where the needle will go in.
There should be a plan in place for when the person with a learning disability is discharged from hospital.
It could include transport from the hospital and helping the person settle in once they arrive home. It may also include details of medication and an ongoing care plan – for example, from their GP or social services.
Read more about being discharged from hospital.