Frequently Asked Questions About Healthcare

There are some questions which are frequently asked and here we have provided answers to these with links to further information. If you have unanswered questions after reading this information please contact us for individual support.

Accessing Healthcare from The CBF on Vimeo.


FAQ:  The doctor said he couldn’t do any tests because my relative wouldn’t cooperate and now ther are an adult “it is their choice”. What can I do?                   

A: If your relative is over the age of 16 years, a doctor will seek the individual’s consent to treatment first before beginning medical tests. Without proper consent given, the doctor’s actions could be illegal. If your relative has a learning disability the doctor should consider if they have the ability to make that particular decision (known as mental capacity) whether to refuse or accept the medical test. The doctor will have to consider if your relative can understand what might happen if they refuse to have the medical test. In order to know if your relative has capacity, the GP or other medical professionals must carry out a capacity assessment. For your relative to be judged as having capacity they must do all of the four things below:

  • Understand the information given to them to make a decision e.g. what the test is, why they need it, what it will involve, what are the benefits or its risks etc.

  • Remember that information long enough to be able to make a decision.

  • Use or weigh up the information given to them to make a decision.

  • Communicate their decision. This could be using words, photos or sign language – whichever way they usually communicate.

If your relative does have capacity to make a particular decision that means they can choose whether to have or not to have any medical tests carried out by the doctor. If your relative is over 16 years with capacity to make a particular decision and can understand the risks and benefits but chooses to refuse medical tests, the professionals or you will have to respect their decision and not force them to change their mind.

If your relative does have capacity but requires extrasupport to make this particular decision, they should be given all appropriate support to make this decision. This also applies if your relative’s capacity to make decisions changes over time because of illness, disability or anxiety etc. There are things the GP or health professionals can do to support your relative to make the decision for themselves; this includes communicating using a method they understand, giving them more time to process the questions, seeing them in familiar surroundings such as their home and seeing them at a time they are likely to be responsive. In cases where your relative is not able to make a particular decision, this does not mean that they lack capacity to make other decisions for themselves. They should be encouraged to make other decisions independently.

If your relative does not have capacity to make a decision for themselves, then others will have to act in their best interests. For your relative, this means that the doctor or other medical professionals will have to decide whether having the tests is in their best interests. This involves looking at what would happen if they did not have the test, their wishes, and whether there is an alternative. It is a legal requirement for professionals to consult family carers where their relative lacks the capacity to make a decision. This means that doctors (or other medical professionals) have to ask for your views (and that of others involved in your relative’s life including siblings) about what you think is in your relative’s best interests and take this into consideration when making a best interests decision. Doctors and other professionals may not consult you if it is an emergency situation. 

Decision makers do not have to follow your views if they believe they are not in the best interests of your relative. In the case where you are not in agreement with professionals you can apply to the Court of Protection for a Judge to make a decision on whether the treatment should be given or withheld. If you want to make sure that your views are listened to by professionals you can apply for a Deputyship to the Court of Protection. The Deputyship for Health and Welfare may allow you to make decisions about health and welfare including medical treatments on behalf of your relative if it is included in the Deputyship order. 

If your relative is under the age of 16 years and you have parental responsibility you should be involved in the decision making process of your relative’s health whether they have capacity or not. There are exceptions to this, read more on the NHS Choices, available here.

Where to find out more information

For a family guide on ‘Using the Mental Capacity Act’ see Hft’s guide here and their videos on here

Mental Capacity Act resource pack produced by Mencap available here

A guide for parents of children under 16 on ‘Decision-Making, Confidentiality and Sharing Information’ produced by Cerebra available at here

If you are worried that you are not being involved in best interests decisions see our ‘Making decisions’ FAQ here and for template letters to challenge decision click here

For more information about applying for a Deputyship see our ‘Getting legal deputyship’ information sheet here

Read Adam’s story about consenting to treatment on our website here


FAQ: “We find it difficult to go to health appointments – what should health professionals do to make it easier?”

A: If your family member displays challenging behaviour, you might find it difficult to book or get to healthcare appointments, to get tests done or even to get the treatment your relative needs. The difficulties may be because your relative cannot tell you how they feel or finds it hard to cope with new places, new people or with waiting. If healthcare staff don’t understand or respect people with learning disabilities, or if the health service is inflexible, then getting healthcare can be even harder. Here are some of the things you can do to make things easier:

  1. Ask them to listen to your ideas and tell them about what the individual might find stressful during appointments to make things easier for everyone. Health professionals and NHS support staff (e.g. receptionists) should support all patients to access healthcare and be flexible to meeting the specific needs of patients with learning disabilities. They should listen to what parents or carers say. To help with this, people can have their own Health Action Plan and or Communication Passport. Always take the communication passport to all appointments.
  2. You can request ‘reasonable adjustments’ to enable easier access to services for your relative. The Equality Act 2010 says that service providers, including hospitals and GP surgeries, must take reasonable steps to remove barriers which stop disabled people from having access to the same healthcare services as everyone else. Examples of adjustments which service providers can make include: early or late appointments, longer appointments, somewhere quiet to wait, priority appointments, easy read information. Also, when being referred for tests by a GP or other specialists, ask them to include any reasonable adjustments they might need to make in the referral letter. For more on how to request ‘reasonable adjustments’, read Katie’s story. Disabled people accessing health services are also protected from direct or indirect discrimination by the Equality Act 2010.
  3. Ask if there is a Learning Disability Liaison Nurse (LDLN) who can help plan a hospital or GP Surgery visit. LDLN are specialist learning disability nurses, they have a better understanding of the needs your relative may have. They may be able to co-ordinate between different health professionals and might be there at the time of the appointment to help with anything extra needed on the day.

Where to find out more information

To download or listen to an example of an Easy Read Health Action Plan, visit Easy Health website here.

To find out more about communication passports, visit Communication Passports website here.

To find out more about what counts as a ‘reasonable adjustments’, visit the Equality and Human Rights Commission website here.

Katie’s story is on our website alongside other stories from families, available here.

To read more about the Equality Act and direct and indirect discrimination please visit Sense website here or Mind website here.


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