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MSA Trust

5. Professional Support for Your Emotional Wellbeing

Given the close link between physical and mental health, there will be times when you would benefit from professional support for your mental and emotional health and well-being. This section gives information about the kinds of professional support available and how to access it.

Asking for support may not come as easily as asking for medical treatment, and not all health professionals will routinely ask about your emotional wellbeing, but don’t let this put you off. If you are unsure, embarrassed or worried, you are welcome to talk through your concerns with one of our MSA Nurse Specialists. Click here if you wish to go back to the Main Menu.

“Emotional support was given by family members but I think professional help for the everyone should have been readily available”

Your GP

Including discussion of your emotional and mental health at your GP appointments can help to get the most from the support being offered. If this feels awkward or you are not sure how to start the conversation you may want to plan what you want to say. Doc Ready is a website that helps you to put together a checklist of how thoughts or feelings are affecting you, that you can print out or take with you on your phone or tablet.

Your GP can discuss with you what kinds of mental health support may benefit you. Depending on where you live, your GP may be able to refer you for free counselling or therapy or to online self-help and support services.

“…Just knowing people such as the MSA Specialist Nurse, our GP surgery and our OT were out there and willing to help was support in itself”

Medication

Your GP may suggest medication to help reduce the impact of anxiety or depression, or you may wish to ask about it yourself. Your GP can explain how different medications may help and any possible side effects and should regularly check how well it is working. If you are unsure or have more questions you may find it helpful to talk to your MSA Nurse Specialist about which medications may work most effectively for people with MSA. Our MSA Nurse Specialists can also speak to your GP with your permission.

Self-Help Resources

Although not specifically designed for people with life limiting illness, the NHS has some self-help guides online. These are based on Cognitive Behavioural Therapy principles to help to recognise and manage anxiety and low mood. Some are available on audio as well as printed or as online resources.

Depending on where you live, your GP may be able to refer you for guided self-help for stress, anxiety or low mood, with support from a mental health practitioner online or over the phone.

Health and Care Professionals

Talking about how your physical and mental health affect each other can also help you to get the most from the appointments with other health and care professionals that you see, for example: Parkinson’s Nurse, Neurology Nurse, Health and Social Care Services, Occupational Therapist, Physiotherapist, Neurologist and Speech and Language Therapist. Our MSA Nurse Specialists can advise you on how to make the most of these services and can offer input to professionals about MSA with your permission, so that they understand more about the disease and how it may be affecting you.

Hospice Care Providers

Many hospice care providers offer a range of free or low-cost services that can help you to look after your emotional wellbeing. It does not matter whether the condition is in the early stages or is more advanced, services such as emotional support, counselling therapies, as well as complementary therapies such as reflexology and massage may be available. Partners or close friends or family who are providing care to you may also be able to access these services to support their own wellbeing.

“Alongside the physical care, the emotional support has also proved vital to us. My husband and I have both received professional counselling”

Many people believe that hospices only provide care for people who are approaching the end of their life, as this until recently was their primary role. However, this has changed a great deal and hospices are increasingly involved in supporting people at different stages of a life-limiting illness.

Because hospices are experienced in providing support to people with life limiting illnesses, they will have experience of adapting sessions to take account of your needs.

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

Complementary Therapies

A complementary therapy is a treatment that uses a ‘holistic’ approach, aiming to treat the whole person, including mind, body and spirit, rather than treating symptoms alone. Complementary therapies can be used alongside conventional medicine and can be used for symptom management and to enhance a sense of physical, mental and spiritual well-being.

Examples of complementary therapies are massage, reflexology, and acupuncture, all of which can help to relax muscle tension and help promote a sense of wellbeing. You may wish to discuss which therapies might work best for you with your doctor or nurse. It’s also important to tell the complementary therapist about your medical condition and any treatments that you’ve had or are having.

In some areas you may be able to find local organisations such as hospices that offer complementary therapy at low or no cost, otherwise it is available privately.

Counselling and Talking Therapies

“In depth counselling would, I think, have helped deal with accepting the inevitability of it all”.

Being able to explore your thoughts and feelings with a trained therapist such as a counsellor, psychotherapist, or psychologist can be very helpful when living with a life-limiting illness or when supporting someone with the condition. Therapy is confidential, meaning that you can speak openly without worrying about upsetting people close to you.

Regular sessions can help you to explore how MSA is impacting on your life and about the changes and losses that you are facing. Your therapist will support you as you explore whatever concerns you have and can help you to find ways to manage or overcome feelings of anxiety or depression.

More therapists now offer sessions online rather than you having to travel which may make it more accessible if you have a quiet and private space at home where your sessions can take place.

There may come a time however when talking becomes too tiring or challenging for ‘talking therapy’ to be accessible, and therefore you may wish to seek therapy early on or to consider art or music therapy (see below)

Finding a Counsellor or Therapist

A local charity …provided counselling for both of us separately and together every 3-4 weeks which was invaluable.”

Therapy may be available free of charge via your GP or at your local hospice (also see section on Hospice Care Providers), or in some areas free or low-cost counselling may be available from a local counselling organisation. If you live in England you can also refer yourself (or ask your GP to refer you) to the Increasing Access to Psychological Therapies programme. (IAPT). In some areas IAPT is developing therapy specifically to help people with long term health conditions.

Some employers also provide free counselling to employees and their families and it may also be available on some private health insurance policies. Therapy is also available privately in most areas although this can be expensive.

Where you live and whether you are accessing therapy via the NHS or HSE; a hospice or local organisation; or are paying privately, will all affect which psychological therapies are available to you, as well as waiting times.

Whilst there are many different types of talking therapy, research into which therapies work best for people living with a life limiting illness is at an early stage. Most important is that you feel comfortable with the therapist, that they are open to adapting their approach to take account of the impact of MSA on sessions, and that they are an accredited member of a professional body and work to a code of ethics.

Your first meeting with a therapist whether online or in person, is to explore what you would like to get from counselling or therapy. There will also be an opportunity for you to ask the counsellor any questions you may have, including how sessions might be adapted if needed.

More detailed information about kinds of therapy and finding a therapist can be found at:

Adapting Sessions

It is unlikely that therapists will know about MSA and you may wish to give the counsellor details of the MSA Trust before your initial appointment, so that they can learn a little about the condition. You may also wish to ask your Speech and Language Therapist or one of our Nurse Specialists to help you explore with a counsellor how sessions might be adapted to help you get the most from them. Examples might be shorter sessions to account for fatigue, or using prompts or symbols to help prepare or start a discussion. This is especially important if you are finding speech tiring or are using a communication device.

Paying for Therapy

If you are able to pay for private therapy, you can find a therapist via the websites listed below. These are the main professional therapy organisations in the UK and in the Republic of Ireland. Fees vary considerably but expect to pay between £40 and £70 per session. The MSA Trust has a small welfare budget and in some circumstances may be able to make a contribution to private therapy costs for people affected by MSA including main carers. Please contact our Helpline for further information about this or if you need help finding a therapist.

Many therapists do not charge for the first session as this is an introductory appointment, and some therapists may offer reduced rates. Each website has a directory of therapists and a search facility. You may wish to narrow down your search by entering keywords such as chronic health condition, terminal illness, or disability, as this should help you to find details of therapists with experience of health related issues. If you wish to have therapy online you can broaden your search area as geographic location will not matter. A search will show you a list of therapists who meet the search terms you have entered, along with some information about their therapeutic approach and qualifications, fees and contact details.

Main Professional Bodies:

British Association for Counselling and Psychotherapy

United Kingdom Council for Psychotherapy

British Psychological Society

Counselling and Psychotherapy in Scotland

Irish Association for Counselling and Psychotherapy

Irish Association of Humanistic and Integrative Psychotherapy

The Psychological Society of Ireland

Counselling for Partners or Family

There may be other people in your family such as partners or children who would find therapy helpful, and even if this is not something you want for yourself, being aware that it might be helpful may make it easier for them to seek or accept this kind of support for themselves.

Children can benefit greatly from counselling where someone in their family is living with a life-limiting illness. Some Schools, Colleges and Universities provide counselling to students, or may be able to make a referral to a local counselling organisation or a hospice providing counselling and other kinds of emotional support.

Creative Art Therapies

Creative art therapies offer an alternative to talking therapies by utilising art media, or through music rather than words or speech, to express and explore thoughts and feelings and to help maintain emotional wellbeing.

“For Les, music therapy was an opportunity to express himself through improvisation and choice of music, and the sessions were filled with joy and laughter”

Creative Arts Therapists are often experienced in working with people with illness or disability and will offer varied ways of exploring thoughts and feelings in the sessions. You do not need to have any particular skills or any experience in the arts, and many people find the process of creating and making can feel energising and help to maintain a sense of wellbeing. Art therapy uses media such as paint, clay, collage and other materials as the main way of communicating thoughts and emotions, while Music Therapy utilises sounds, rhythm, tone and instruments to create and express, which can invoke powerful memories and associations.

Sessions are confidential and non-judgemental, and as with talking therapies it is important that the therapist is a member of a professional body.

As with talking therapies, some hospices offer creative art therapies to people who are living with life- limiting illness either free or at low cost and your GP may be able to refer you.

If you are able to pay for private therapy you can find a therapist using the websites listed, and it may also be available on some private health insurance policies.

The main professional bodies including how to find a therapist can be found at:

British Association for Music Therapy

British Association of Arts Therapists

Irish Association of Creative Arts Therapists

“We gradually learn to adjust if we can maximise what we can still do, minimise the impact of what we cannot, and avail ourselves of as much information, practical help and social support as we can”

The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information in this resource, please contact us and we will do our best to help you.

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