multiple sclerosis community support

Community based charities

Support in your community comes in many forms, from informal support from friends, neighbours and local groups through to support from organisations. Most organisations providing localised help are charities.

Research by the Charity Commission in 2014 showed that 40 percent of people said that they had benefited from or used the services of a charity in the last year. Since then, it feels that this trend towards community-based support has continued with a huge growth in charitable support during the pandemic. There are well over 160,000 charities in the UK. The largest sector of charitable activity is the provision of ‘social services’, and ‘culture and recreation’. The charity and voluntary sector are increasingly involved in delivering services and support that, in the past, may have been provided by the public sector (for example working to reduce loneliness and isolation).

If you feel you need support, whether it is to reduce isolation, increase your activity, explore an interest, get help with applying for state benefits, or participate in your community there are likely to be organisations in your locality to help.

Multiple sclerosis specific support

There are more than 60 multiple sclerosis (MS) therapy centres across the UK. Each of these are individual, independent charities with a shared ethos of ‘self-help is our way of action’. Some of these charities are quite small, offering limited services from local volunteers. Others are much larger, offering a range of therapies from exercise and physiotherapy through to counselling and hydrotherapy. Most of these charities will likely have some degree of social support for the local MS community too.

The Neuro Therapy Network is a membership organisation that supports the therapy centres. They have a useful ‘find a centre’ function on its website to help you find your nearest therapy centre.

Not all therapy centres are part of the network and there may well be a multiple sclerosis or neurological condition specific charity in your area.

There may well be independent support groups near you too, like the ‘Farnborough MS Support and Therapy Group’ in Hampshire, ‘the ‘Aberdeen Independent Multiple Sclerosis (AIMS) charity in and around the Aberdeenshire area or ‘MS Peoples Help’ who have a charity shop and support people with aids, ramps, gardening and handy person jobs in the Bristol area.

The MS Research and Relief Fund provides support across the Northeast of England. They have a centre with an exercise suite, provide UK-wide small grants and work in an outreach capacity across many towns in the region.

Revive MS Support is based just outside Glasgow and provides a wealth of support to people living with MS in Scotland. They provide a range of complementary therapies as well as physiotherapy, speech and language therapy and their own MS nurse.

Neuro therapy centre’ is based in Chester and offers physiotherapy, aqua therapy, counselling and more. They have a social space café and offer drop-in support to family carers. The centre offers support to anyone with a neurological condition.

The MS Society has many local groups covering most districts and regions of the UK. They have a useful find ‘local support’ function on their website which can link you to your local group and show you the support on offer.

MS Together’ is a voluntary organisation that aims to help young people with MS get the support they need and connect with others. They are a support group for people aged 18-35 living with MS in the UK. MS Together have over 600 members who are active in their social media community, they have informal WhatsApp group chats, and provide volunteer led one-one-support.

MS-UK understand the potential impact MS can have on maintaining positive mental health. Although we do not offer localised help, we have support from our online mindfulness courses and have written a Choices booklet ‘MS and mental health’.

National charities with a local presence

Sometimes it is good to be connected to supportive organisations and groups in your area. They can help with practical and emotional issues, as well as helping you to have an active presence in your own community. Being included and participating in local groups and activities can help to reduce loneliness and a sense of isolation.

Mind is a national charity supporting people affected by mental health issues. There are also around 125 local Mind charities providing support in local communities across England and Wales. Local Mind services can include support groups, talking therapies, 1:1 support and more. To see if there is a local mind in your area you can use the ‘local Minds’ tool on their website.

The Scottish Association for Mental Health (SAMH) is a national charity supporting people with mental health issues and they work in over 60 communities across Scotland. They provide an array of support including outreach, therapeutic horticulture, peer support and community engagement. You can use their website to find out if there is support from SAMH in your community.

There are more than 125 local Age UK charities across England, these along with Age Scotland, Age Cymru, and Age NI bring together a wide network of services and support offering to the whole UK. Some services are for different ages, with most being aimed at those over 60. They can offer services such as home help, befriending, toenail cutting, social groups, handy person services and more. Some of these services will have a charge. Age UK’s website has an ‘In your area’ function which will help you find any local support.

For family or unpaid carers, the Carers Trust have a network of over 120 partner grass roots charities that can help family carers access grants, support groups, carer wellbeing initiatives and more. They have a ‘carer services near you’ webpage to help source local support.

Citizens Advice provide bespoke advice tailored to each of the home nations. You can use the Search for your local Citizens Advice tool to find your local centre if you live in England and Wales. If you live in Northern Ireland then the list of branches and opening times can be found on their ‘get advice in Northern Ireland’ webpage and if you are in Scotland on their ‘advice for Scotland’ page. Citizens Advice services can help with benefits, housing, navigating health services, consumer rights and much more.

Local charities

There are often local ‘association of voluntary services’, ‘council for voluntary services’ or similarly named organisations that support districts, boroughs, or regional charitable infrastructure. These charities are usually membership organisations, and increasingly not only do they provide support for small local charities but they provide direct services themselves. These ‘hub’ charities will usually have directories of small and hyperlocal charities and community groups.

Most of these local charities are members of the National Association for Voluntary and Community Action (NAVCA). NAVCA have a useful interactive map on their ‘find a member’ webpage to help you source your local charitable organisation supporting your local voluntary sector.

The Northern Ireland Council for Voluntary Action (NIVCA) is a membership body for the voluntary and community sector in Northern Ireland. They have a range of websites including ‘Community NI’ which is a large community and voluntary services directory covering Norther Ireland.

The Scottish Council for Voluntary Organisations (SCVO) is the membership organisation for the voluntary sector in Scotland. They have over 2,700 member organisations made up of social enterprises, charities and voluntary groups. They have a ‘member directory’ to help you find charitable organisations in Scotland.

‘Good Neighbour’ schemes are run by volunteers who give support to local residents who may need help on an occasional or regular basis. Although each charity is individual to its community, broadly they can help with things like picking up prescriptions, transport to appointments, befriending and social inclusion. There are good neighbour projects dotted up and down the UK. There may be one where you live. Examples of good neighbour schemes in action are Suffolk, Hampshire, Cardiff, Tyneside and Cragshill near Edinburgh.

Community wellbeing schemes

Each individual community is different, with varied needs, so it is only right that each community develops and leads their own community initiatives. There are some great projects out there, it can be a case of finding them and working out how you can make the most of them.

There are many activities funded by local authorities and health services, based in community settings. They can range from exercise referrals, ‘knit and natter’ groups, community cafes and much more. They should be as individual as the community they service. Your local NHS Clinical Commissioning Group (CCG) or health board will have a newsletter or other ways of engaging with patients and the public. You can find your local CCG by using the NHS website. You can find health walk projects in your area by using their website.

Living with MS can mean that it can be more challenging to live an active lifestyle. ‘Health walks’ are a low impact exercise option and are run by trained walk leaders who are volunteers that can give help and make sure no one gets left behind. They are usually inclusive and accessible to people with a variety of mobility needs. The Ramblers ‘Walking for Health’ is England’s largest network of health walks with over 360 active walking schemes. You can use the ‘walk finder’ page on their website to find a walk. ‘Paths for all’ is a Scottish charity that is working towards a healthier and greener Scotland by promoting walks for health in every local authority area. ‘West Wales Walking for Wellbeing’ is a scheme that provides accessible walking opportunities for people living in communities across West Wales. ‘Walking in Your Community’ is a scheme to encourage people throughout Northern Ireland to get walking. As these walking groups are set across a variety of locations and geographical areas, it is a good idea to find out first if they are suitable for any mobility restrictions you may have.

Men’s Sheds’ are community spaces for men to come together and share skills and knowledge. The activities tend to be group activities and community projects for men to enjoy together. Men’s Sheds help reduce loneliness and isolation, give a purpose and help older and vulnerable men to have a community presence. There are currently nearly 600 Men’s Sheds in the UK. There may well be one near you. You can use the Men’s Sheds association’s ‘find a shed’ function on their website to find your nearest one.

If gardening, horticulture and animal care is something that interests you and would help your wellbeing, then it would be worth exploring to see if there is a social farm, care farm or community horticultural project in your area. ‘Social Farms and Gardens’ is a charity working across the UK supporting communities to farm, garden and grow together. They have an interactive map that will help you source a project in your locality.

There are undoubtedly more and varied groups and organisations supporting people in their communities. If you want to find out about what may be available where you live, you could talk to your local councillor, check noticeboards, local Facebook pages and other social media. If you need help to find resources, why not speak to a member of our helpline team. If you know of community based supportive organisations that you think we should include, please get in touch.

Social prescribing services

There are many factors that can affect people’s overall health and wellbeing. NHS services found that sometimes part of the root cause for health problems, such as anxiety, were connected to social issues like loneliness or lack of opportunity to connect with others. ‘Social prescribing’ is a way of connecting people to practical and emotional community support. The support staff are sometimes called ‘link workers’, ‘community navigators’ or ’support brokers’. The workers and partner organisations are often based in or linked to GP practices and accept referrals from professionals and the public. The National Academy for Social Prescribing has some useful information about ‘what is social prescribing?’. There are social prescription services in all four of the home nations, however they do not have universal coverage at the moment.

Village agents and community agents

‘Village agents’ or ‘community agents’ are services that are often run by partnership organisations in rural areas and frequently work in tandem with social prescribing services. These services are there to help rural communities with benefits issues, support for family carers, small aids and equipment and promote the values of independent living. They usually employ local people with a solid knowledge of the community, and they can provide one-to-one help if it is needed. These services are not nationally available but are becoming more common. Essex, Somerset and Sussex are examples of where these services work well. There may well be something similar in your area.

Support from MS-UK

If you need help finding out if there is support in your area, please feel free to contact the MS-UK helpline. We are here if needed. We will talk to you about your needs, interests and aims and support you with a ‘community map’ of local groups and organisations that can help you with your issue. We know that not all services or groups are available in each area, but most communities have resources that can be tapped into.