Getting Support in Hospital: A Carer’s Guide for Adults with Learning Disabilities

Hospital visits can be scary. They are worrying for anyone, but when you care for someone with a learning disability, the stress is often much higher. I know this feeling well. My adult son has a learning disability, and over the years, we have had our fair share of hospital trips. Some were planned, and some were emergencies.

In the beginning, I felt helpless. I worried that doctors would not understand him or that he would be frightened and confused. But over time, I learned that we have rights. I learned that there are specific things we can ask for to make the experience better.

I want to share what I have learned with you. This guide is for carers who want to make sure their loved ones get the best possible care. It covers everything from hospital passports to legal rights.

Why Hospital Visits Are Hard for People with a Learning Disability

Hospitals are busy places. They are loud, bright, and full of strangers. For my son, this sensory overload can be too much. He might struggle to tell a doctor where it hurts. He might not understand why he needs a blood test or an X-ray.

When communication breaks down, mistakes happen. This is why we, as carers, have to be the bridge between our loved ones and the hospital staff. We have to speak up.

The NHS knows this is a problem. They have rules in place to help, but sometimes staff need a gentle reminder. Knowing these rules gives you the power to ask for what your loved one needs.

Understanding Your Rights: Reasonable Adjustments

The most important thing I learned is the term “reasonable adjustments.” This is a legal term from the Equality Act 2010. It simply means that hospitals must make changes to help disabled people including those with a learning disability to use their services.

It is not just a favour. It is the law.

For my son, a reasonable adjustment might mean:

• A longer appointment time. This gives doctors more time to explain things slowly.
• A quiet place to wait. Waiting rooms can be overwhelming. We often ask if there is a spare room or a quiet corner where we can wait until the doctor is ready.
• Information in Easy Read. This is when letters or leaflets use simple words and pictures.
• Allowing me to stay overnight. Usually, visiting hours are strict. But if my son is anxious, the hospital should let me stay with him to keep him calm.

You should tell the hospital what adjustments you need before you go. If it is an emergency, tell the receptionist or nurse as soon as you arrive. Do not be afraid to say, “My son has a learning disability and needs reasonable adjustments.”

The Hospital Passport: Your Most Important Tool

If you take one thing away from this post, let it be this: get a Hospital Passport.

A Hospital Passport is a document that tells hospital staff everything they need to know about your loved one. It is not a real passport for travel. It is a guide for doctors and nurses.

It includes important medical details, but it covers much more than that. It tells staff:

• How the person communicates (for example, if they use Makaton or need simple sentences).
• How they show pain (maybe they go quiet, or maybe they rock back and forth).
• What makes them anxious and what helps them relax.
• Who their important people are.
• How they like to take medication (for example, with yoghurt or syrup).

I try to keep a copy of my son’s passport in my bag at all times. I also keep a digital copy on my phone. When we get to the hospital, I hand it to the nurse straight away. It saves me from having to repeat the same information about his learning disability and needs ten times. It also helps staff see my son as a person, not just a patient.

You can download a template from the Mencap website or ask your local learning disability team for one. Fill it out when you are calm at home. Make sure it is kept up to date.

The Role of the Learning Disability Liaison Nurse

Many hospitals have a special nurse called a Learning Disability Liaison Nurse. These nurses are absolute angels. Their whole job is to help people with a learning disability when they are in hospital, and help plan for when they are going in. Ours helped when Ben went in for an operation as they ensured he had his own room, that I could stay with him and that all staff knew he needed things explained carefully so as not to worry him.

They can help by:

• Talking to the doctors to make sure they understand your loved one’s needs.
• Organising reasonable adjustments.
• Helping to plan for when your loved one leaves the hospital.
• Supporting you as a carer.

When you know you are going to the hospital, call ahead and ask to speak to the Learning Disability Liaison Nurse. If you are already there, ask the ward staff to contact them for you.

Having someone on the inside who understands learning disabilities makes a huge difference. They speak the hospital’s language, but they also understand ours.

The Accessible Information Standard

In 2016, NHS England introduced the Accessible Information Standard. This is a rule that says all NHS providers must meet the communication needs of their patients.

It has five steps:

1. Ask: Staff must ask if you or your loved one has any communication needs.
2. Record: They must write these needs down clearly in the medical notes.
3. Flag: These needs must be highlighted so every member of staff sees them.
4. Share: If they send you to a different department, they must pass this information on.
5. Act: They must give you information in a way you can understand.

This applies to carers too. If you need information in a specific format to help you support your loved one, you have the right to ask for it.

Making Decisions: The Mental Capacity Act

One of the trickiest parts of being a carer is making decisions about medical treatment. The law that guides this is the Mental Capacity Act 2005.

The Act says we must assume a person, even with a learning disability, has the “capacity” (the ability) to make their own decisions unless proved otherwise. Just because someone has a learning disability does not mean they cannot make decisions.

My son can decide what he wants for lunch. He can decide if he wants a plaster on a cut. But he might not be able to decide if he should have complex surgery because his fear of needles will concern him so much that he doesn’t always process the reasons behind the surgery beyond needing an injection, etc.

Best Interests Decisions

If a doctor decides your loved one cannot understand a specific decision, they must act in the person’s “best interests.”

This does not mean the doctor decides alone. They must consult you. You know your loved one better than anyone. You know what they would want if they could understand.

If you have a Lasting Power of Attorney (LPA) for Health and Welfare, you can make the decision for them. If not, the doctor makes the final call, but they must listen to your views.

If there is a disagreement about serious medical treatment, you can ask for an Independent Mental Capacity Advocate (IMCA). This is someone independent who supports people who lack capacity and have no family to speak on their behalf. Even though you are there, knowing about IMCAs is helpful if you ever feel your voice is not being heard.

Preparing for a Planned Admission

If you know your loved one with a learning disability is going into the hospital for an operation or test, you can plan ahead. This reduces stress for everyone.

Here is a checklist of things to consider:

1. Visit beforehand: Ask if you can visit the ward before the admission date. Seeing the bed and meeting the nurses can make it less scary.
2. Update the Hospital Passport: Make sure all the information is correct.
3. Pack comfort items: Bring things that make your loved one feel safe. This could be a favourite blanket, a tablet with headphones, or a specific magazine.
4. Talk about it: Use social stories or pictures to explain what will happen. Be honest but positive.
5. Plan the discharge: Start thinking about what help you will need when you get home before you even go in.

Dealing with Emergencies

Emergencies are harder because you cannot plan. Panic is natural for you and the person with a learning disability. But try to remember these steps:

1. Grab the Hospital Passport: It may be in their hospital notes; if you don’t have it, mention it so they can locate it.
2. Tell the ambulance crew: Explain immediately that the person has a learning disability. Tell them how best to communicate.
3. Stay close: In A&E, stay with your loved one. Explain to the receptionist that they cannot wait in a crowded room if it will cause distress.
4. Be the voice: Doctors in A&E are in a rush. You need to speak up clearly. Repeat important information if you have to. Be clear with yes, he will manage that, or no, he won’t, if you are sure and be careful not to agree to anything that will upset the person you care for, unless there is no other option.

If Things Go Wrong: How to Complain

We all hope for good care, but sometimes things go wrong. If you feel your loved one is not being treated right, you should speak up.

First, talk to the ward’s nurse in charge. Often, they can fix the problem straight away.

If that does not work, contact the Patient Advice and Liaison Service (PALS). Every hospital has a PALS team. They are there to help patients and families resolve problems with the hospital. They can talk to senior staff on your behalf. I have also found speaking to the Learning Disability nurses can be helpful if you want to draw their attention to a lack of training in learning disabilities, for example, rather than make a complaint.

If you are still not happy, you can make a formal complaint. You can find out how to do this on the hospital’s website or by asking PALS. Never be afraid to complain. It helps the hospital learn and stops the same thing from happening to someone else who may not have someone like you to speak up.

Looking After Yourself

Supporting someone with a learning disability in the hospital is exhausting. You are on high alert all the time. You are the nurse, the translator, and the comforter.

Please remember to eat and drink. If you can, ask a friend or family member to sit with your loved one for an hour so you can get some fresh air. You cannot pour from an empty cup. If you burn out, you cannot help them.

Staff usually understand that carers need a break. Ask them to call you immediately if there is a problem while you are gone.

Summary: Your Key Takeaways

Going to the hospital is never easy, but being prepared makes a massive difference. Remember these key points:

1. Reasonable Adjustments: You have a legal right to ask for changes that make things easier.
2. Hospital Passport: Carry one. It speaks for your loved one when you cannot.
3. Liaison Nurses: Use them. They are your best allies in the hospital.
4. Your Voice Matters: You are the expert on your loved one. Trust your instincts and speak up.

We do an important job as carers to someone with a learning disability. By knowing our rights and preparing well, we can ensure our loved ones get the safe, dignified care they deserve.

Frequently Asked Questions (FAQ)

What is a Hospital Passport and where can I get one?

A Hospital Passport is a document that tells hospital staff about a person’s health needs, communication preferences, and likes and dislikes. It is vital for people with learning disabilities. You can download a free template from the Mencap website or the NHS website. Your local community learning disability team can also provide one.

Can I stay with my adult son or daughter overnight in hospital?

Usually, yes. While hospitals have visiting hours, they must make “reasonable adjustments” for people with learning disabilities. If your loved one needs you there to feel safe or to communicate, you should ask to stay. Most hospitals will provide a chair or a fold-out bed next to the patient.

What if the doctor ignores my advice about my loved one?

If you feel a doctor is not listening, stay calm but firm. Remind them that you know the person best. If you are still worried, ask to speak to the sister or charge nurse (the nurse in charge of the ward). You can also ask to speak to the Learning Disability Liaison Nurse or contact PALS (Patient Advice and Liaison Service) for support.

What is a “Best Interests” meeting?

If your loved one cannot make a specific decision about their medical treatment (because they lack mental capacity), the professionals must decide for them. A “Best Interests” meeting is where doctors, nurses, and you (the family/carer) discuss what is best for the patient. Your views must be considered in this meeting.

How do I find the Learning Disability Liaison Nurse?

You can call the hospital switchboard (the main number) and ask to be put through to the Learning Disability Liaison team. Alternatively, if you are already on a ward, ask the nursing staff to contact them on your behalf. It is a good idea to contact them before a planned admission.

Have you experienced good support in the hospital for your loved one with a learning disability? We have found the inpatient and outpatient support at Kings Mill Hospital (Mansfield/Sutton-in-Ashfield) to be really good. I was given a pull-out bed to sleep on in the same room as Ben, and sometimes given food and drinks too. In Newark hospital, we found they were also equally helpful, but we have only experienced the pre-op assessment area and the out-of-hours care centre. Let me know your thoughts and experiences in the comments below.

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