Multiple Sclerosis: friends & family experiences

Messages to health and social care services

We asked people what their messages would be for health and social care services based on their experience of having a relative or friend with Multiple Sclerosis (MS). Many such messages appear throughout this website. Here we summarise some additional key points that people wanted to get across. 

Messages to health and social care services were often about the person with MS, rather than the relatives or friends themselves, but there was also some overlap. Several people mentioned that their relative with MS had, ‘on the whole’ received very good care. Anthony’s message was, ‘Keep doing what you’re doing now, because the people we’ve had contact with have been nothing short of superb’. Emma wanted her husband to have more contact with the consultant.
Some people mentioned extra services that would improve the quality of their life as a carer; for example, getting a higher rate of Personal Independence Payment so that they could afford to pay a care worker to help put the person to bed, or turn them during the night. But most did not expect to receive these extra services because they thought that funding was limited.

On the other hand there were some services which people thought it was reasonable to expect. Betty felt that regular follow-up appointments with consultants and MS nurses should be offered. This might sound obvious, but Kay Z said that her cousin had been recently diagnosed and hadn’t been given any follow-up appointments. Betty also thought that carers should have training in how to lift. 

Anita and Sarah Z both felt that it would have been really helpful if they could have a ‘buddy’ or a ‘mentor’. For Anita, as a teenage carer, it would have made a huge difference to her life to have someone to ‘take her out of it for a while.’ She hopes this kind of service could be organised through volunteering. Emma thinks that psychological care is important for both the person with MS and their partner or carer. Although her husband was, rightly, the focus of care, sometimes Emma wanted to ask, ‘Who is looking after me?’
David’s GP always asks him how he is coping which makes a difference to him; he feels supported and he feels that he is getting good care. 

Some people thought that the health and social care services could be more ‘joined-up’ and more efficient with practical things like supplying equipment.
Several people talked about the importance of communication. Eric made a plea for professionals to ‘listen to what our real needs are,’ and Tony stressed that it was important to talk to the person with MS and the relative ‘as a unit’. Patience said, ‘We need you to listen to us, to work with us.’ Kay Z suggested that the health service has an important role in ‘signposting’ people to what help is available. Betty said, ‘We need more help and the worse a person gets the more help we need. But, unfortunately, you don’t get it. If you don’t actually scream and shout and stamp your feet, people just ignore you.’
When the person with MS had to go into hospital their relatives sometimes felt that they weren’t sure what was going on and that ‘everyone’s so busy you don’t feel you should ask questions’.

Sometimes people wanted professionals to have different attitudes. For example, Ian wanted the doctors he had come in contact with to be more open-minded about treatment options; Sarah Z felt that social workers providing services for her husband didn’t consider her needs enough and that they should have more awareness about the ‘stresses of the person who hasn’t got it’. After continuing to care for her husband while she was having treatment for breast cancer, Kate said that doctors and nurses in the community should keep in touch with elderly people to check that they are managing:
(Also see ‘Getting help with care needs for MS’ and ‘MS: contacts with health, social care and voluntary organisations’ and ‘Decisions about treatments for MS’).

Last reviewed July 2018.
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