Hospital passports and hospital stays for someone with a learning disability

It is one part of looking after the person's health, which the family guide to learning disability covers as a whole.

The person should write as much of it as they can, in their own words, with a parent, a sibling or someone who supports them helping with the rest. It is written in the first person because it is their document, and NHS England's guidance on health and care passports says someone else can complete it for the person if they are not able to do it themselves.

Several NHS trust templates, like the example above, split the passport into three colours in order of urgency. Red is what could cause harm if nobody knew it, so if there is only time for one page, fill in this one. Amber is what makes the stay go well or badly. Its part on pain matters more than it looks: someone who does not say they are in pain may still show it, and a stranger will not know what rubbing an ear means for this person. Green is who the person is, which gives nurses something to talk about and helps them notice when the person is not themselves.

The templates: Mencap's hospital passport, NHS England's template and guidance with its plain English guide, and Hampshire Hospitals' passport as one trust's example.

A passport only helps if it is with the person when something happens. Keep the original at home where everyone knows to find it, with a copy in the bag that goes to appointments and a photo on the phones of whoever is likely to go with the person, so there is a copy even after an emergency admission. Ask the ward to keep a copy with the notes.

Ask the GP or hospital about the Reasonable Adjustment Digital Flag as well. It is a marker on the person's NHS record showing the adjustments they need, and NHS England says every publicly funded health and care service must be able to share, write to and read from it by 30 September 2026. It does not replace the passport, which says far more.

A hospital may have learning disability nurses, often called the liaison nurse or the learning disability liaison team. The NHS guide to going into hospital says they support people with a learning disability and should meet the person and their carer as soon as possible after they arrive, or before a planned admission. Your GP, a social worker or PALS can check whether the hospital has one. Ask for them by name on the first day rather than waiting to be found, and give them a copy of the passport.

A reasonable adjustment is a change the hospital makes so the person can use its services as well as anyone else. Under section 20 of the Equality Act 2010, where the way a service works puts a disabled person at a substantial disadvantage, the provider must take such steps as it is reasonable to have to take to avoid it, and where the problem is information, that includes giving it in an accessible format. What counts as reasonable depends on the hospital and the situation, so ask for what would help and explain why.

If you are refused something that would plainly help, ask what the ward can do instead and ask for the reason in writing. The Patient Advice and Liaison Service (PALS) in every hospital gives confidential advice and support to patients, families and carers and can help sort out a problem before it becomes a complaint. Reasonable adjustments, the dentist and STOMP covers adjustments at the GP and the dentist in more detail.

1. 1

   The person decides, with help

   Always the starting point

   The Mental Capacity Act says a person must be assumed to have capacity, and must be given every practical help to decide before anyone says they cannot. For treatment that means explaining in words and pictures they understand, giving them time, and choosing a good moment.
2. 2

   If they cannot decide, a best interests decision

   This decision, at this time

   Capacity is judged one decision at a time. If the person cannot make this particular decision, the doctor treating them decides in their best interests, taking account of their wishes, feelings and values and consulting the people who know them, including the family.
3. 3

   An attorney or a deputy, if there is one

   Only with the right paperwork

   If the person made a lasting power of attorney for health and welfare while they had capacity, or the Court of Protection has appointed a deputy, that person can make some decisions for them. Being a parent or next of kin does not give this authority on its own.
4. 4

   An independent advocate, if nobody else can be consulted

   Serious medical treatment

   Where serious medical treatment is proposed and there is nobody apart from paid carers who can be consulted, the NHS must instruct an Independent Mental Capacity Advocate, unless the treatment is urgent.

For parents of an adult son or daughter this can be hard to accept. You will not usually be the decision maker, but you should be asked, and what you know about how the person communicates and what they would want carries weight. Making decisions for a grown-up son or daughter covers lasting powers of attorney and deputyship, and how mental capacity is assessed sets out the test. The law is in the NHS guide to consent to treatment and sections 4 and 37 of the Mental Capacity Act.

Some hospitals use a wider plan called ReSPECT, which records recommendations for a future emergency after a conversation with the person and their family. The Resuscitation Council says it is not legally binding and can be reviewed.

If the person has epilepsy, epilepsy care at home covers seizure plans and rescue medication, which should go in the red section. For someone with a learning disability who is also living with dementia, hospital stays with dementia and learning disability and dementia cover the extra steps.

If the person needs more support at home than before, ask the hospital about a care needs assessment before they leave, and read hospital discharge explained and funding care after a hospital stay for who pays. The government's hospital discharge and community support guidance sets out what the NHS and councils should do.

Some families want a paid carer for the first weeks at home. PrimeCarers is an introductory service: we introduce self-employed carers and do not provide or manage care. You can search for carers near you and compare their rates, which on PrimeCarers run from £18 to £25 an hour with our fee included, against £28 to £35 at an agency. Before a carer appears in a search we check their ID and right to work, check they have an enhanced DBS certificate (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and interview them online. Carers are insured while they work. We do not check qualifications, training or references, and there is no way to search for learning disability experience, so ask each carer what they have done and who with. The family, or the person, chooses the carer and agrees the routine with them, and can keep the same person for as long as it suits both. Hourly care after a hospital stay covers the first weeks.