Adults, Emotional and Psychological – Mental Health and Wellbeing
Adults, Emotional and Psychological – Mental Health and Wellbeing
SMA can mean dealing with loss of strength and mobility; experiencing serious or life-threatening episodes of respiratory illness; having to rely on other people for personal care and daily living; having to fight to get the equipment you need. Any one of these (or other issues) can take a significant toll on emotional health and wellbeing.
For many, SMA is part of who they are, what they know, and they wouldn’t want not to have SMA.
Some have down times when they may recognise the description of ‘chronic sorrow’ – a recurring sadness created by loss, which can be similar to grief and depression.
For people diagnosed later in teenage or adult years, the shock of diagnosis and the changes caused by their SMA, such as effects on mobility and independence, can impact hugely on emotional wellbeing and may be similarly described as a ‘chronic sorrow’ created by loss.
If you are struggling with your emotional wellbeing, for whatever reason, it’s good to try to talk about it and get some support. That said, it’s not easy to find the right place for this and it’s well known that there’s a serious lack of good accessible emotional and psychological support services.
Given these limitations, we’ve gathered together what we’re aware of that may be worth exploring:
Mindfulness, relaxation, exercise, using apps and online courses, listening to podcasts are all possible ways to look after your mental well-being.
The NHS website has a section on 5 steps we can all take to improve our mental wellbeing.
"We’re all human, we all have bad days – sometimes all you need is a little shove in the right direction."
Life’s Too Short – in this Community Voice, Ross, a young adult who has SMA, gives his five top tips to help improve a low mood.
You can also listen to Becca and Ross (who have SMA), talking to Ellie (an Integrative Art Psychotherapist), about: Mental Health and living with a long term condition (in two parts) from our Living with SMA podcast:
Part one:
Recorded: June 2023
Part two:
Recorded: July 2023
If you’re concerned about your mental health or the mental health of someone you care about, speak to your GP. They’ll be able to help you access help as quickly as possible. Some other organisations can also support you – see Support Organisations below.
Getting involved with organisations and groups can be really positive. You might like to look at some of the ideas in these two sections:
Mental Health Foundation – information to help people look after their mental health
Mind / information and support. They also have a network of 130 Local Mind organisations. Services vary, to some extent depending on what’s already provided locally. They may include talking therapies, peer support, advocacy and crisis care.
Samaritans – Phone 116 123 – free, confidential, non-judgemental listening service (available through phone 24 hours a day, 365 days a year; email jo@samaritans.org, online chat available certain hours). They also have a Self-Help app to help keep track of how you’re feeling, and get recommendations for things you can do to help yourself cope, feel better and stay safe in a crisis.
Support Line – Phone 01708 765 2000 – information on a wide range of problems and confidential emotional support to children, young adults and adults by phone, email and post. They have details of counsellors, agencies and support groups throughout the UK
The Mix – Phone 0808 808 4994 – free information and emotional support for young people under the age of 25. Helpline, Email, online chat and crisis text services.
Some people find it helpful to talk with an independent trained professional about their feelings and how they’re managing day to day. It can be an opportunity to express feelings you haven’t wanted to say out loud to anyone in your family or friendship network.
Free Talking Therapy Services:
- England:
For those aged 18+ you can access free NHS Talking Therapies (formally known as IAPT – Improving Access to Psychological Therapies) for anxiety and depression. You can either refer yourself directly without a referral from a GP, or a GP can refer you (either way, you need to be registered with a GP to get talking therapies on the NHS). Find out more.
- Scotland:
NHS Scotland offers ‘Living Life’ – free phone support sessions (for those aged 16+) using Cognitive Behavioural Therapy (CBT) based techniques. You can refer yourself for an assessment by phoning 0800 328 9655. Find out more.
- Wales:
People aged 16 and over can sign up for a free 12-week course of online therapy called ‘SilverCloud’. This uses methods like Cognitive Behavioural Therapy (CBT) to help people manage their problems. Find out more.
- Northern Ireland:
Referrals for any talking therapies must go through your GP. Find out more.
Waiting times for an appointment with these services will vary and may be quite long.
Private counselling:
If you think counselling would be helpful for you and can afford it, you could consider seeing a local private counsellor. These organisations can help you find one:
British Association for Counselling and Psychotherapy (BACP) – guidance on counselling and how to find a suitable counsellor. Phone: 01455 883 300.
Counselling Directory – online information about different types of counselling and a directory to search for qualified counsellors.
Relate – Phone: 0300 100 1234 – face-to-face, phone and online relationship counselling services. Fees are charged to cover the cost of the counselling session, not to make a profit. Some offer subsidised counselling sessions.
If you are not sure who to speak to or which is the right route for you, our Support & Outreach Team is here to talk through your options.
These services are offered by people who have SMA themselves:
Emotional Respite – a counselling service run by Helen Rutherford who has SMA Type 2. She offers support including to those living with a disability (or family members), or who have long-term illnesses.
Experience Change: a cognitive behavioural hypnotherapy service run by Jessica Sturrock who has SMA Type 3. Jessica specialises in anxiety related to living with a disability, particularly social anxiety, health anxiety and self-confidence.
Hear4U Counselling – a counselling service run by Oliver Pool, a counselling psychotherapist who has SMA Type 2.