Adults, Emotional and Psychological – Mental Health and Wellbeing
Adults, Emotional and Psychological – Mental Health and Wellbeing
Last updated : September 2024
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 well-being.
For many, SMA is part of who they are and what they know. They would not want to not have SMA.
Some have down times when they may recognise the description of ‘chronic sorrow’ – a recurring sadness created by ongoing loss. This can be similar to grief and depression.
For those diagnosed in their late teens or adulthood, the shock of the diagnosis and the effects of their SMA can greatly impact their emotional well-being. It can create a ‘chronic sorrow’ from loss.
If you are struggling with your emotional well-being, for whatever reason, it is good to try to talk about it and get some support. That said, there is a serious lack of good accessible emotional and psychological support services.
Given these limitations, we have gathered together what we are aware of that may be worth exploring:
Mindfulness, relaxation, exercise, using apps and online courses, listening to podcasts. These 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 well-being.
"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 > – 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, talking to Ellie, an Integrative Art Psychotherapist, in this two-part podcast: Mental Health and living with a long term condition
Part one:
Recorded: June 2023
Part two:
Recorded: July 2023
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 more than 100 Local Mind organisations. Each local Mind has their own website with information on what they offer in your area.
Samaritans – Phone 116 123 – free, confidential, non-judgemental listening service. Sometimes writing down your thoughts and feelings can help you understand them better. You can contact them by email or letter >.
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 are managing day to day. It can be an opportunity to express feelings you have not 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 about NHS Talking Therapies >.
- 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 about Living Life >.
- 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 about Silver Cloud >.
- Northern Ireland:
Referrals for any talking therapies must go through your GP. Find out more about mental health services in NI > .
Waiting times for an appointment with these services will vary. They may be very 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 who are disabled, 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 being disabled, 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.