Muscular Dystrophy UK is launching a new team of health and social care professionals on our staff to offer advocacy support in clinics around UK.
Receiving a diagnosis of a muscle-wasting condition can be devastating, and you can be left feeling isolated. At a time like this, it is important to know that the charity is here working with your clinicians to ensure you receive the best health and social care and advice. The new Here For You: Clinic Support Team will do just that.
As part of this project we have recruited four advocacy officers to work with clinical teams in London, Wales, Northern Ireland and Scotland. We are in the process of recruiting to two further roles in England, to be based in Newcastle and Oxford. They are drawn from a range of therapy and social work backgrounds to enhance the support we are able to offer.
Consultant Neurologist Dr Chiara Marini-Bettolo, from the John Walton Muscular Dystrophy Research Centre in Newcastle, speaks about the importance of these roles within clinics:
The new position of Advocacy and Information officers would be a wonderful opportunity to serve the many people of the region who are living with a neuromuscular condition. The role would provide essential support to our patients and their families. It is vital that patients receive the necessary care and assistance at home and in the community. An Advocacy and Information Officer is pivotal to ensuring our users receive the highest quality health, education and social care services. Access to a range of interventions including benefits, timely professional assessments and appropriate outcomes is becoming increasingly difficult in an ever-changing environment. The role of representing the needs, views and opinions of patients and carers would be a fabulous and much needed asset for The Muscle team
This new team of six will offer the charity’s support and advocacy services locally, working with the clinical teams and advocating on your behalf. If you are in area where the roles are already in place, you can get in contact with the officers to find out how they can help you.
You can find out more about the project on our Here for you: Clinic Support page.
Working for Muscular Dystrophy UK I will be leading on this exciting new venture to develop these roles to provide support and advocacy services locally.
I have seen the work of Muscular Dystrophy UK and the drive and passion of the people who work with the charity, and I am really excited that I now have the opportunity to influence and improve the care for people living with muscle-wasting conditions.
Over two years our aim would be to evaluate the support provided by the advocacy officers and based on the success of this roll it out to other centres.
I have experience working directly in health and social services for individuals with disabilities, and am very aware of the difficulties many families face in getting the right support. I will be spending time in clinics at GOSH where I am available to offer advocacy support and information about Muscular Dystrophy UK, so please do come speak with me.
I am here to help you to overcome those barriers and support you through liaising with other services and providing you with the information about what you are entitled to. Whether you just want to chat, are looking for some information or need support with welfare claims, housing adaptations or other applications, I am here to help
I will be spending time in clinics getting to know individuals and their families and offering any advocacy support and information about Muscular Dystrophy UK.
I spent a number of years working in the voluntary sector before qualifying and working as a social worker in Scotland. I have always really enjoyed working with individuals and their families and being able to provide different types of care and support to them in a variety of different settings, and I look forward to bringing that to bear in this role.
My role is unique because it’s so varied and I get to help people with problems daily. Often it just helps to know that you are not alone.
I can let people know about Muscular Dystrophy UK and the support we can offer – having us in clinic appointments gives another layer of support. I talk to people and find out what is their main concerns. Whether they need support with benefit claims, housing or adaptions, I am here to help.
I have a muscle-wasting condition and I remember feeling very isolated and not knowing who to go to for information or support when I was diagnosed. I want to help change that.
Just knowing Muscular Dystrophy UK is there, and that you can have the name of someone to call and access the organisation’s range of support and information, helps make sure that no-one feels that they are alone.
Muscle-wasting conditions are rare. We know that many people living with them feel isolated, and that some healthcare professionals may not always understand muscle-wasting conditions. Part of my role is to bridge that gap – to provide practical support to families where required and assist with the upskilling of professionals.
As an occupational therapist I have a broad view of what individuals need and what support is available, both in and outside of statutory services. I work with individuals and families to look at every aspect of their lives, and how their muscle-wasting conditions affect this. I am able to advocate on the individual’s behalf, on issues such as access to benefits, housing or specialist equipment.
I attend muscle clinics at Belfast City Hospital on a regular basis, but I am also available to support people in their own home and in the wider community.
I am based in the Centre for Life Newcastle with the Neuromuscular Team. I believe the role of Advocacy and Information Officer provides a crucial link between health and other community services. It is my role to offer support and advice on a range of issues that are important to you.
I understand that living with a muscle-wasting condition can present challenges on a daily basis and that it is important to get the right support at the right time.
It can be difficult to know where or who to go to for help and that processes can be very complicated and stressful. I am able to offer you the information you need or liaise with agencies on your behalf.
I am not only available at clinics but also happy to be contacted directly for advice, advocacy support or just to talk.
I have previously worked as a Social Worker and I strongly believe that people have the right to the highest quality care and that I am now in a position to help people achieve this.
I’m a nurse, with experience of supporting people with muscular dystrophy. I enjoy having deeper conversations about, for example, medical decisions, living independently and enablement. I look forward to helping individuals and families with housing issues, care packages, benefits, and supporting them in many different situations.
I attend outpatient neurology clinics at the John Radcliffe Hospital in Oxford and work closely with the team. Please don’t hesitate to contact me – I’m here to help.