Do I need more support?

There is no hard and fast rule about the best type of support for mental health, or when to access it.

It will depend on what you are struggling with, how much it is affecting you, and what sort of help you would find most acceptable.

Start by working out what issues you are finding most difficult, and what might be behind feeling as you do.

If you aren’t sure, talking to people you trust might help you work that out.

What sort of help?

Think about what sort of help would be most useful, and who could help you access it.

Self-help resources and peer support groups can often be accessed either through your rare condition organisation, mental health organisations, or local community groups.

You might also feel more comfortable talking to a support organisation that you identify with culturally, religiously, or because of your sexual orientation.

There may also be times when you’d like to access professional support for you, or your child’s mental health and wellbeing.

How do I get professional help?

We’ve listed some of the ways to access professional help below.

Try to ask for help in good time. Waiting lists can sometimes be long, so if things start to get more difficult there will hopefully be less time to wait before seeing someone. If you no longer need an appointment when it comes through, just let the person know.

Your GP

Your GP is a good place to start if you want to access professional help. You can start by letting them know you have been struggling, and asking what sort of help might be available.

If you are not sure how to begin the conversation, make some notes beforehand about how you have been feeling, and for how long.

Your GP can work out with you what sort of help might be most useful and is available. This could be counselling, online self-help and support services, or ‘social prescribing’ for activities that can connect you up with others, or help your overall mental wellbeing.

Depending on your situation, they might also discuss medication, suggest some tests (particularly if you have a rare condition that impacts mood) or write to your rare condition doctor for advice. If your GP does suggest medication, just check in with them that it’s safe to take alongside any other medication you take, and remind them about your rare condition.

Rare condition healthcare professionals

All rare condition doctors should have an understanding of how rare conditions can impact you and your family’s mental wellbeing. This is not always the case, but things are changing!

When you are impacted by a rare condition that is known to have a direct impact on mental health and mood, this should be monitored as part of your rare disease care. You can ask about this at appointments as sometimes it can get overlooked. Some clinics have psychologists who you might see when you go to an appointment, or just if you need to.

If you need help with something in particular that is impacting your mental wellbeing such as pain, your child’s behaviour, or difficult symptoms, let them know about this too. This includes any difficult experiences you have had as part of treatments, or care.

Hospices

Hospices have changed a great deal in the past few years. Many now offer support at different stages of life-limiting illnesses or degenerative conditions, not just end of life care. They can provide help and support for the whole family. This includes children’s hospices.

Your GP, nurse or another member of your healthcare team can give you information about local hospices, and also make a referral for you if appropriate.

Counselling & psychotherapy

Counselling and psychotherapy are terms that are often used interchangeably. Very broadly speaking, psychotherapy tends to be longer-term with more focus on you ‘as a person’. Counselling may be more focused on a particular issue or difficulty you are struggling with, and is usually more short-term.

Counselling and psychotherapy is confidential. This means so you can speak freely without worrying about upsetting people close to you, or it being recorded on your medical notes (unless you see an NHS therapist).

Talking to a counsellor for the first time can feel a bit daunting. But many people say it makes a real difference to how they feel, and even in a few sessions start to feel the benefit.

Accessing therapy privately

Many counsellors work privately. Fees vary considerably according to region and experience. Some offer ‘low fee places’ for people on benefits, or students. Some local organisations also provide free or low cost therapy. These are often with trainee counsellors, or through charities. Your GP or library might have more details.

Make sure that a counsellor is registered (and preferably accredited) with one of the approved professional bodies below.

Different types of therapy

There are a lot of different ‘types’ or approaches in counselling. The Mental Health Foundation gives further information about different types of counselling and therapy, and what to expect from them.

Not many therapists may have an understanding of rare conditions, but many will have an awareness of the impact of chronic illness or disability.

How to access a therapist

The organisations below have a ‘search a therapist’ function to search for a therapist by location, or speciality such as parenting, caring, chronic illness etc

The British Association for Counselling and Psychotherapy have a ‘search facility’ to look for a registered therapist in your local area, online or by specialty, for example, by illness or caring.

United Kingdom Council for Psychotherapy

Couples & relationship therapy

You do not have to be thinking about breaking up in order to see a couples’ therapist. Talking things through with a neutral third party can help you both have a better understanding of each other’s needs and perspective, help resolve conflicts, and find ways to feel closer again.

It is not unusual for the impact of a rare condition to place a strain on couple relationships.

This might be due to:

• • different emotional coping styles
  • changes to your identity, roles or lifestyle
  • concerns about the future
  • sexual difficulties
  • different perspectives and opinions on how best to cope with different scenarios (including parenting)

Fees for couples therapy vary widely. Some organisations and individuals provide therapy on a ‘sliding scale’ of fees according to household income so do always ask about this.

Always look for a therapist registered with a relevant Professional Body like the ones below.

Creative therapies

Creative art therapies offer an alternative to talking therapies and use art, dance and movement music to help express thoughts and feelings.

They can be particularly helpful for anyone with more limited language, learning difficulties, or neuro-diverse children and adults.

Creative arts therapists are often experienced in working with people with illness or disability. You do not need to have to be good at art, music or dance to go participate. The focus is not on skills, but on finding new ways to express feelings that may be hard to put into words.

The main professional bodies to find a creative art therapist are:

British Association for Music Therapy 
British Association of Arts Therapists

How to access NHS Talking Therapy (& other mental health support)

England

If you live in England you can refer yourself (or ask your GP to refer you) to the Talking Therapies service. 

Wales

If you live in Wales you can access free online therapy without needing to go through a GP via SilverCloud online therapy.  You can also contact C.A.L.L, the community advice and listening for Wales. 

Scotland

If you live in Scotland, Living Life is a free NHS phone service offering therapy for anyone in Scotland aged 16 and over with low mood, mild to moderate depression, anxiety or a combination of these symptoms. 

Northern Ireland

If you live in Northern Ireland, you can use the website Minding Your Head to find information about local support in your area. Lifeline, Northern Ireland’s crisis response helpline, can sometimes also offer a course of short-term counselling (either remote or in-person). 

Other ways to access counselling & therapy

• Some schools, colleges and universities provide counselling to students, or may be able to make a referral to a local counselling organisation.
• Employers sometimes provide free EAP counselling to employees and their families.
• Rare disease clinics may have child psychologists/psychotherapists or counsellors attached.
• Counselling may be available on some private health insurance policies.

Therapy is also available privately in most areas, although this can be expensive. If you are able to pay, you can find a private therapist via the websites in the useful links below. Fees vary considerably, but many therapists give an indication on their website. Don’t be embarrassed to ask.

General mental health support

There are also lots of organisations that provide help and support for a wide range of difficulties from anxiety, to eating disorders, to self-harm and phobias.

Every Mind Matters is the NHS website for a wide range of mental health issues and support including strategies and your own self-care “Mind Plan’. 

Hub of Hope  is a major database of all types of mental health support organisations nationally and locally. You can search for help by postcode, and issue you need help with.

MIND is a leading charity providing national and local mental health support services. Some local branches also offer counselling, or group therapy. They also have a wide range of self-help resources. 

Mental Health Foundation have lots of information and advice, including how to support someone you care about. 

Specialist mental health organisations

There are also a number of specialist mental health organisations for particular groups, and for specialist issues:

Black Minds Matter provide culturally competent therapy, usually with black therapists.

LGBT Foundation provides support to all those who identify as LGBTQI+, including advice on navigating healthcare.

Pink Therapy provides a ‘search a therapist’ directory to find an online or in-person LGBTQI+ friendly counsellor.

Gingerbread supports single parents, and also runs a helpline and wellbeing workshops.

Movember is a leading UK charity and campaign supporting men’s mental health, including Dads with their ‘Family Man’ parenting resources.

Support for young people

CAMHS Resources provides self-help resources for young people including podcasts, videos and apps. 

Childline  provide a wide range of support for children and young people, including a helpline and counselling (including via a sign language interpreter).

Young Minds supports young people, their parents and those who work with them.

Kooth free online support for young people, including counselling.