Multiple Sclerosis: friends & family experiences

MS: contacts with health, social services and voluntary organisations

There is a range of support offered by different organisations, although people are not always aware what is available and how to access it. People talked to us about support both for the person with Multiple Sclerosis (MS) and for themselves, and about their needs for both practical help and advice as well as emotional support.

Support from health services

People came into contact with a variety of health care professionals, including GPs, specialist nurses and doctors, physiotherapists and others such as occupational therapists, speech and language therapists, dieticians, counsellors. They had mixed views about the quality of care received. Some people reported very positive experiences. All the services Louise and her husband used were local and she felt they worked well together. Kay Z had received a lot of help and been ‘signposted’ well to relevant services. A good relationship with the GP is helpful, and there were many positive comments about GP support. As Louise points out, it is not just the person with MS who benefits but also their family members:
Staying with the same GP for a long time could be helpful – though David said things had improved when new, younger GPs joined the practice and brought new skills. Robin also pointed out that as generalists GPs can’t always be as knowledgeable about MS as a specialist MS nurse.

Many people valued the availability, knowledge and communication skills of MS nurses, where available. Sarah thinks they are ‘lucky’ in their county to have such good services; but she notes that they are ‘a rich county’. The MS nurse sometimes helped people to get other key services, such as district nursing or physiotherapy.
Others were less satisfied with the health services they received, either for their family member or for themselves. Ian felt that his wife ‘just didn’t seem to get very good service or advice’. Even though he thought the MS nurses were ‘good at what they do’, he felt that what they could do, because of the present state of knowledge about MS, wasn’t very helpful to a person living with MS. Stella found the MS nurse depressing and not very helpful when her partner was diagnosed. Kate thought that older people who are caring for a relative did not get enough attention from primary care services. Until she injured her back lifting her husband 5 years ago, Chez said she’d had no help, no ‘offer of care’.
Neurologists typically see people with MS infrequently, and were sometimes seen by relatives as not making much contribution. This might be because the specialist had limited time or there was little in the way of treatment he or she could offer. But some people really appreciated the skills of the specialist doctor. Sarah described the last neurologist her mum saw as ‘brilliant’. Compared to MS nurses carers sometimes felt specialists were perhaps more focused on clinical details and less on the whole person. Stella said the neurologist was ‘very friendly’ and made an effort to see them quickly. But ‘he didn’t have very good people skills… It’s the kind of academic approach to medicine and ….you could just feel that he felt very, very remote from us. That he didn’t feel any closeness to us. Or - he wasn’t really talking down to us, but at the same time you could feel this inner distance. That he was talking as if he was talking to aliens rather than a human being to a human being and that was a bit sad.’
Regular physiotherapy can be important for people with MS and several people talked about how helpful physiotherapy had been to their relative. But it wasn’t always available on the NHS, or was time-limited, and physiotherapists with specialist knowledge of MS could be hard to find. Karl and his partner found a specialist NHS physiotherapist on the internet. Morris and Norma both paid for their relative’s physiotherapy sessions. Ray pointed out that the physiotherapy exercise class also offered valuable social contact.

Sometimes the emotional pressures of caring for a relative or friend with MS led people to seek counselling. Alice had found counselling helpful, but she felt that she really needed to look deep inside herself to find solutions to emotional pain. Having said that, because she wasn’t expecting her friend to live much longer, she was ‘saving up her counselling hours’ for what she knew would be a very painful loss.
See also ‘Getting help with care needs for MS’ and ‘Messages to health and social services

Social services and local authorities

Views about local authority social service departments were also mixed, and people often pointed out how difficult it can be to know what’s available, what you have to pay for and what can be provided free. Social services may be able to supply equipment, adaptations and personal caring services. For Robin, the ‘MS Navigator’ in his local authority was a really helpful person to go to for advice and assessment.
Relationships with social services were not always easy and some people were not satisfied with the services provided. Chez said they were helpful to start with but, as her husband’s care started to cost more money, she found herself ‘fighting’ with social services. Sarah Z had an ‘enormously tense time’ negotiating social work support for her husband. Dave was frustrated and annoyed that funding had been withdrawn from the sitting service which gave valued respite from caring for his wife.
As in Sarah’s case, there were concerns that social workers did not always appreciate or give priority to the needs of carers themselves as opposed to the person with MS. Betty felt that she was being treated as lazy, or as a benefits cheat, because she wasn’t working. Dave said: ‘Me, what do I get? Zilch, unless I go out to a carers’ meeting. I get an assessment once a year if they can be bothered to come out, they did it over the phone and that’s it’. 

(Also see ‘Adaptations, aids and equipment for MS’).

Voluntary sector support

People sometimes looked beyond the statutory health and social care services for support, to charities and self-help groups. Many people valued the information and other services provided by major MS charities like the MS Society and the MS Trust. Betty had really appreciated the MS Trust 24 hour helpline. Mike and Jenny were grateful for a grant from the MS Society towards the cost of their honeymoon. But Mully felt that the means-testing applied for some services wasn’t always done ‘in a kind way’.
Some people were members of local MS Society branches; this meant that they gave support, through fundraising for example, as well as receiving it. Dave, Patience, Tony and Chez all had connections to the armed services and belonged to a group called ‘Mutual Support Armed Forces,’ linked to the MS Society. A charity set up to support visually impaired armed forces personnel bought a house for Patience and her husband.
Robin and Eric both spoke highly of MS Therapy Centres, not just for the services they provided but for camaraderie with other people with MS and their carers. Robin learned at the MS Therapy Centre that the Citizens Advice Bureau (CAB) would visit his wife at home, which led to a reassessment and increase of her Disability Living Allowance. Betty described the help she got from ‘a lady at the CAB’ in negotiating services with the council as ‘incredible…without her help I probably would have had a nervous breakdown.’

People join support groups for a range of reasons; to get practical information, emotional and social support and reassurance that they are not alone. Mully didn’t enjoy being part of a formal support group, but did value getting together informally with other people with MS.
John X described the MS group his wife went to as ‘depressing’, but said her arthritis group was ‘fun’. The local Carers Association is, he says, ‘a self-help group worth going to’ and he joins that group himself once a month. 

Other people felt that group activity was not for them. Karl and his partner preferred to ‘hang out together’. Neither Louise nor her husband wanted to attend an MS group, partly because they wanted to carry on having a normal life and partly because he didn’t want to see people in a worse condition than himself. Mully felt that sometimes there was competition among people at support groups to be ‘less of a cripple than you are’. Having been very active in the local MS Society, Louise Z said she had learned that ‘before people get MS we are all very, very different and MS doesn’t make us any more similar. And sometimes when you get together in a place like the MS Society the only thing you have in common is the illness or that experience of the illness. And to expect everyone to want the same sort of things from a Society, it’s never going to happen because we’re all different’. 

See also Looking for information on MS; Being a ‘carer’ and Advocacy and activism for MS.

Last reviewed July 2018.
Last updated July 2018.

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