It has been a month since I joined Muscular Dystrophy UK as its new Chief Executive. And what a great month it has been.
I knew about the work of Muscular Dystrophy UK and the community having worked in children’s hospice and palliative care for more than a decade. During this time, I had met and worked with many young people with muscle wasting and weakening conditions and I had always admired the charity. However, what I had not fully appreciated was the breadth of the work, nor the wide range of more than 60 conditions that we support.
From investing millions in research into future treatments, to supporting the community to live well, to campaigning for policy change, Muscular Dystrophy UK deliver real and life-changing impact.
It has been a whirlwind first month.
I have met staff and volunteers from across the organisation to better understand the charity, what people are most proud of and where they feel we can do even better.
I have met members of the community, including a great visit to the Northern Ireland muscle group to better understand the challenges they face and how we can better support them.
I have heard powerful stories from our supporters about why they give their time and money to help us deliver positive impact.
And I have spoken to many of the clinicians and academics leading cutting edge research and innovation to better understand muscle wasting conditions and develop new treatments to slow their progression.
A number of things have struck me in the course of these conversations.
Firstly, the lives of people living with muscle wasting conditions have rarely been more challenging, with rising cost of living and very real barriers to accessing the support they need.
Our Financial Insecurity report published in November showed the true impact of rising costs on the lives of the community, with more than half feeling financially insecure and two thirds reporting deteriorating mental wellbeing as a result. This financial outlook was followed by our report on the state of neuromuscular services in Scotland which found an estimated 7,300 people with muscle wasting and weakening conditions are “missing” from official NHS Scotland records. It demonstrated more than ever the need for more consistent support for people living with these conditions.
If the world is changing rapidly for our community, there are opportunities too. There is so much going on in research and significant progress in new treatments and drugs to slow the progression of muscle wasting conditions. And there is political change too with a new Westminster government and forthcoming devolved elections.
What has really struck me though is the passion and commitment of everyone at Muscular Dystrophy UK to tackling the challenges and making the most of the opportunities.
In the new year, we will begin the development of our new vision and strategy focusing on transforming the lives of more people with muscle wasting and weakening conditions. This will be an exciting process, involving our community, staff, volunteers, supporters and key stakeholders.
With our clear commitment to our community and our expertise in research, support and influencing I am confident that this strategy will rise to the many challenges in the months and years to come.
We are calling for better financial reassurance.
Over half of those who contributed to the report (53%) said they feel financially insecure- echoing concerns following the Government’s budget announcement last month. 17% of those reported feeling very insecure.
We call for action from the UK Government.
Scotland is letting down people with muscle wasting and weakening conditions. Help us create change.
Call us on 0800 652 6352 Monday to Thursday 10am to 2pm. If you call outside of the helpline opening hours, please leave a message and we’ll aim to get back to you within five working days.
You can also email us info@musculardystrophyuk.org.
