We appreciate that watching this drama may lead to challenging emotions or raise questions or concerns for both you and your family. If you have been affected by the drama, or by any of the surrounding press or social media coverage, there is support available for you.
For advice relating to a muscle-wasting or associated neuromuscular condition, in the first instance please contact the neuromuscular team overseeing your or your family member’s care.
Muscular Dystrophy UK is also here to support families. We’re here to help if you need information or simply to listen if you want to talk. Our freephone helpline is open Monday to Thursday from 10am to 2pm and you can also reach our team via email on info@musculardystrophyuk.org.
Over the past ten years great progress has been made in developing treatments for muscle-wasting conditions, and today at Muscular Dystrophy UK we are working on access to 12 treatments for 5 different conditions, and funding 48 live research projects. This has been made possible by the amazing network of fundraisers, donors, families, and the individuals, researchers and clinicians involved in clinical trials.
We appreciate that some of you may have not watched the programme and are considering it. Thoughts from members of the MDUK community shared with us include:
“The diagnosis scene was literally like watching myself on TV, it’s muscular dystrophy but we don’t know what kind…”
“Good to see the whole family story shared in a balanced way, despite being through the lens of a drama.”
We have put together the following links to information and resources to help support you.
Bereavement Support
Bereavement and loss can affect everyone differently, and there is no right or wrong way to feel. Grief is the range of emotions we experience, and the process that we go through in reaction to bereavement or loss. Grief can be very complex, and there are different types of grief that you may experience in response to a bereavement or loss.
We know that no one can understand exactly what your loss feels like to you. However, we also know that, sometimes, it can be easier to talk to someone who is not directly connected to you about the impact of bereavement, grief, and loss on your life. This is why we offer the GriefChat service.
GriefChat is an organisation that supports Muscular Dystrophy UK to provide access to free professional bereavement support. GriefChat helps those dealing with grief by providing them with a safe space to be able to share their story and explore their feelings. GriefChat is open Monday – Friday, 9am – 9pm (except for Bank holidays). During those hours, GriefChat provide a live instant chat service with a qualified bereavement counsellor. Email access is provided at other times and will be responded to by the end of the next working day
To access GriefChat and to access further information on bereavement support please click here.
There is a wide range of organisations that support with grief and different types of bereavement
Get support - Cruse Bereavement Support
Cruse Bereavement Support provide bereavement support and information across the UK. Cruse can provide one-to-one support for adults, and support for children and young people.
Child Bereavement UK helps families to rebuild their lives when a child grieves or when a child dies. They also support children and young people up to the age of 25.
The Compassionate Friends (TCF) is a charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other similarly bereaved family members who have suffered the death of a child or children of any age and from any cause.
Bereavement support for children and families | Winston's Wish
Winston’s Wish is a childhood bereavement charity who have supported grieving children and young people since 1992. They provide specialist child bereavement support services across the UK.
Looking after your mental wellbeing
Mental health refers to our emotional, psychological, and social wellbeing. Our mental health impacts on our thoughts and feelings, and how we act and behave. It also influences how we respond to stress, how we interact with others, and the choices we make. Living with a muscle-wasting condition can have an impact on every part of your life, including your mental health and wellbeing. The impact goes beyond those who are living with a muscle-wasting condition; families and carers can also be affected. It is important that everyone has access to the right support for their mental health when needed
When might I need support?
Mental health problems can happen for no reason, or they might be triggered by specific life events. If you, or someone you know, is going through a period of poor mental health, it can be hard to know when to reach out for help and who to talk to. You may feel uncertain about seeking help. It is always okay to ask for help – there is support available.
You might want to reach out for help:
- If you find that you are regularly feeling worried, upset, anxious or depressed.
- If you are experiencing little enjoyment in your day-to-day life.
- If you are regularly having thoughts or overwhelming feelings that are difficult to cope with or affect how you manage each day.
- If you have difficulty sleeping or there are changes to your eating pattern.
- If you have low motivation or have lost interest in things which you used to enjoy.
- Following a new diagnosis.
- If there has been a recent change in your health or circumstances.
- If you are a relative or carer of a person living with a muscle-wasting condition and are experiencing any of the above.
Useful contacts:
Samaritans – Call 116 123 for free (24-hour service)
Shout - Text 85258 to get in touch with the free Shout mental health service (24-hour text service)
For further detailed information on how to access mental health support please refer to our webpage on Getting mental health support.
Helpful Resources:
Organisations
Together for short lives – supporting children and families living with life-limiting or life-threatening conditions.
Sue Ryder – providing palliative, neurological and bereavement support to people and their families
Marie Curie – providing support and care to people living with a terminal illness, and their families.
Rainbow Trust – providing support to families who have a child with a life-limiting or life-threatening condition.
Sibs - providing support to people who grow up with or have grown up with a sibling who has a disability.
Hospice UK – providing care and support to everyone affected by death, dying and bereavement.
Carers UK – providing unpaid carers with information, advice, and support.
Information on palliative care
Together for short lives - What is children’s palliative care and hospice care?
Marie Curie - What is palliative care?
MDUK standards of care for adults living with Duchenne muscular dystrophy – palliative care video
Information on end of life care
Together for short lives - End of life care
Marie Curie - End of life care
If you have any questions or concerns relating to the NHS care that you or your family are receiving, please contact your specialist neuromuscular team or consultant. Please also see below for further information: