and Information Officer (Scotland) The Role of Advocacy and Information Officer (Scotland) Jackie Munro Muscular Dystrophy UK

Muscular Dystrophy UK Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. We bring together more than 60 rare and very rare progressive muscle-weakening and wasting conditions, affecting around 70,000 children and adults in the UK. We support high quality research to find effective treatments and cures and won’t stop until we have found them for all muscle-wasting conditions We are leading the drive to get faster access to emerging treatment for families in the UK We provide a range of services and resources to help people live as independently as possible.

Here for You: Support Team Muscular Dystrophy UK has recently launched a new team of health and social care professionals on our staff to offer advocacy support in different settings around UK. Our new Here for you: Support programme addresses a growing need for support in local communities, such as help accessing disability benefits, signposting to relevant services and understanding the realities of living with a muscle-wasting condition. As part of this project, Muscular Dystrophy UK have recruited six advocacy officers to work with clinical teams in London, Wales, Northern Ireland, Scotland, Newcastle and Oxford. They are drawn from a range of therapy and social work backgrounds to enhance the support Muscular Dystrophy UK is able to offer.

Introduction Studied at Glasgow School of Social Work and achieved a BA Hons in Social Work. This was jointly awarded by Glasgow University and Strathclyde University. Worked as a social worker within a local authority team, from and worked predominately with Adults from age 16 upwards who had a variety of different needs, Approximately 10 years’ experience working within health and social care, Worked in a variety of settings such as Mental Health, Adult Protection, Learning and Physical Disability, Children and Families, and Older People within both the voluntary and statutory sector.   Now been in post as Advocacy and Information Officer with Muscular Dystrophy UK since April 2017.

The Purpose of Advocacy An Advocate will listen to people in times of need and speak on their behalf should they be unable to do so themselves. Our Advocacy service is here to help anyone with a muscle-wasting condition who is having difficulties getting the care and support, services, benefits and equipment they are entitled to. We can help by providing advice or intervening on an individual’s behalf to challenge unfair decisions.  If individuals are struggling to access services and support which they are entitled to, working with an advocacy service can help lighten the load in times of great stress and be of great help in creating a better quality of life and greater independence for those accessing the service. We also work with two globally renowned law firms. Hogan Lovells and Anderson Strathern who can provide us with legal advice and will take on some cases for us on a pro bono basis.

Case Study 1 (Example) Needs Assessment, Care Planning and Effective Communication Referral received from a professional within the Neuromuscular Team following recent contact with a family at clinic. Parents have disclosed that they have approached social work for a needs assessment to be undertaken and have requested support with long term care planning for their child, who has a muscle wasting condition and who is now in their early teens. Parents have been refused a needs assessment for their child on the basis that there is ‘no need’ and that ‘there has been no recent changes to their situation’. The parents had approached their local social work team a number of times raising their concerns regarding this, but with no success.

Case Study 1 (Example) Needs Assessment, Care Planning and Effective Communication Following a referral being made, the advocacy officer would contact the family and/or arrange a home visit, where this is possible. The purpose of this initial contact would be to provide support and information, with the aim of empowering the family and enabling them to express their needs and choices. Having discussed different approaches which could be taken, the family agreed that, in the first instance, the advocacy officer should write to the local authority social work department/ service manager to request an individual assessment of the child’s needs.

Case Study 1 (Example) Needs Assessment, Care Planning and Effective Communication The advocacy officer would then contact the relevant persons to provide further information relating to the condition which the child has been diagnosed with and outlining the local authorities legal duty to consider and assess someone’s needs. It would also be appropriate at this stage to work collaboratively with key professionals involved with the family who could provide supporting medical evidence in relation to the child’s condition and complex health and care need’s. The local authority would be provided with an agreed amount of time to respond to the written request at this stage. Once a response has been received and if the family are not satisfied with the response from the social work department, the advocacy officer can then discuss and support with other possible options. In this situation it may be that the family want to pursue a formal complaint.

Services and Support Available Support groups and local ‘Muscle Groups’ - Engaging and supporting families and individuals living with muscle wasting conditions. ‘Advocacy Ambassadors’ - Individuals who are living with the condition who offer peer-to-peer advice and support. A local contact point for resources and information from the charity. Regular advice sessions for people affected by muscle wasting conditions to answer questions on, for example, welfare entitlements, equipment provision, housing issues. Emotional support and practical information.

Other Areas of Support: Housing (accessibility, suitability, adaptations) Finance (i.e. access to benefits) Accessing care packages Liaising with other people/ professionals Information and resources Practical and Emotional support Finding out about events/ support in your area Peer to Peer Support Fundraising opportunities Social & Welfare Issues Education Employment Research Campaigning Volunteering Issues surrounding informed consent

Advocacy and Information Officer (Scotland) Tel: 07712523778 Jackie Munro Advocacy and Information Officer (Scotland)   Tel: 07712523778 J.Munro@musculardystrophyuk.org http://www.musculardystrophyuk.org Queen Elizabeth University Hospital – Office Block Ground Floor, Zone 02/1, 1345 Govan Road, Govan, Glasgow, G51 4TF.