Delivery of service
The Social Welfare Service provides free and confidential non-medical information, support and advocacy to the MSA community.
The Social Welfare Specialists (SWS’s), working from home, offer help and support via email, telephone and video calls. In line with Charity Commission guidance, the service is neutral and impartial. SWS support is given based on the information provided by the person being supported. Any medical-based questions are referred to an appropriate MSA Trust Healthcare professional.
Normal hours of operation are Monday to Friday 9am to 5pm. Appointments outside normal working hours can be made in exceptional circumstances, with line manager approval.
The service provides information and support on various matters, which can be broken down as follows:
Requests for information
People living with MSA, carers, family members or external healthcare professionals may contact the service for more information on a specific subject, e.g. holiday insurance, lasting power of attorney, aids and adaptations, wheelchair services, accessible transport options, or employment rights. Cases tend to be brief in nature and often include signposting to other voluntary organisations or statutory services.
Benefits
Supporting people with benefits is a large part of the Social Welfare Service. People registering with the MSA Trust are offered a welfare benefits check which would include a phone or video call to ensure they are receiving the financial support they are entitled to. Based on the information given to the SWS by the person being supported, any unclaimed benefits identified are discussed with the individual and the SWS will offer to assist with their claim.
Welfare benefit claims can be complex and lengthy. Given the nature of MSA, particularly difficulties with speech and fatigue, completing a benefit claim form is usually done over 2-3 telephone or video calls. The SWS’s will gather information from the individual and draft the claim form on their behalf. Once completed, the draft is sent to the individual via email or registered post. Clear instructions are always provided, asking the recipient to check all information is correct and to contact the SWS’s if they wish to make any changes or additions. Once the recipient is satisfied with the form, they will sign it and submit it to the Department for Work and Pensions (DWP) or other relevant department. Following submission of the form, the individual may need to attend a DWP assessment; whilst the SWS can explain what to expect, they do not attend the assessment itself.
A lack of understanding of MSA can lead to incorrect decisions and assisting with welfare benefit appeals is another avenue of support the Social Welfare Service provides. The SWS may write a letter to the DWP asking them to reconsider their decision or provide a letter of support to a Social Security tribunal. Before submitting their letter to the DWP or tribunal, the SWS will send a draft to the individual for their approval. Once approved, the SWS will submit the letter together with a copy of the signed consent of the individual. The SWS does not provide representation at tribunal hearings.
Social care & NHS continuing healthcare
Providing help and support on finding and paying for social care is another important area for the Social Welfare Service. This may include liaising with adult social care teams across the UK and Ireland to ensure care needs assessments for both people living with MSA and their carers are provided in a timely manner.
NHS Continuing Healthcare (CHC) is a complex area and the Social Welfare Service is able to provide information on the CHC process and how to request an assessment. The SWS’s do not give an opinion on a person’s eligibility for CHC as this can only be done by a health or social care professional, nor do they attend assessments. Appealing a CHC decision is beyond the scope of the Social Welfare Service and the SWS’ will signpost to more appropriate, specialist support.
Advocacy
The Social Welfare Service advocates on behalf of people living with MSA or carers when the need arises. The SWS’s will discuss the particular issue with the individual and their desired outcome. On accepting an advocacy case, the SWS will ask the individual to complete a consent form, giving permission to liaise with the relevant organisation, local authority, or government department on their behalf. The individual is kept fully informed throughout and the SWS will seek approval from them if decisions need to be made.
Welfare grants programme
The MSA Trust’s welfare grants programme is mainly to be used for cost-of-living support and the immediate needs of people affected by MSA. The Trust is able to provide small one-off grants to our MSA community. Requests for grants may come direct from the individual or via a health or social care professional. The SWS’s manage the grants programme, with all grants requiring approval from an SWS and the CEO or Head of Operations. We have a separate Welfare Grants Policy with more detail about what may or may not be covered, which is available upon request.
The SWS’s will also research other sources of support which may be available for the person, based off the information provided to them.
Support Groups / webinars
A vital part of the SWS role is attending MSA Trust support groups, both online and in-person. This provides an opportunity for people living with MSA, carers and family members to meet an SWS and discuss any non-medical questions or concerns they may have. The SWS may facilitate the support group when required.
The Social Welfare Service runs three specialist online webinars per year. The webinars usually have a specific theme e.g. social care or welfare benefits. Invitations are sent to all those who have given prior consent to be contacted. The SWS’s will give a presentation on the particular subject and will then open up a Q&A. The SWS’s attend other appropriate webinars facilitated by the MSA Trust, such as the webinar by Compassion in Dying.
Information materials and publications
The MSA Trust provides additional information via our website and factsheets, all of which have been given Patient Information Forum (PIF) accreditation. The SWS’s regularly review all information within their remit to ensure it remains current and accurate. On occasion they may be asked to draft new material, which will then be reviewed before being submitted for PIF approval.
The MSA News magazine is published three times per year. A SWS will write an article on a relevant topic for each edition.
Policy & campaigns
In conjunction with other MSA staff we carry out policy and campaigning work, ensuring that the work reflects the views of our MSA community. We aim to be effective advocates for change for people affected by MSA by developing and implementing campaigns to influence policy, or practice. The SWS’s draft content for website, our MSA News magazine and campaigns to raise awareness about a particular issue. The SWS’s work collaboratively with other organisations, such as other health charities and bodies including the Disability Benefits Consortium. The SWS’ work to ensure evidence-based advocacy in policy and campaign work, involving people with lived experience of MSA.
Created: February 2026
Next Review: February 2027
Version: 1.0