Some people we spoke to described themselves as an ‘advocate,’ a ‘champion,’ or an ‘ambassador’ for their relative with MS. They talked about things they had done to push for the benefit of the person with MS; for a particular treatment, for equipment or access to facilities, or for better care. Some people got involved in fundraising for MS research as a way of helping their own relative indirectly.
Paul talks about fighting for funding to get his wife a particular reclining chair. If the rules need changing,’ he says, argue and change the rules.
Bernard used information he had got from reading medical literature to persuade a consultant to prescribe beta-interferon for his wife.
Norma was worried that her son’s symptoms weren’t getting any better and that he didn’t have a diagnosis. With some effort, she persuaded his GP to talk to her about her concerns.
Anita was her mum’s main carer through her teenage years and into adulthood. She spoke up when she thought her mum wasn’t getting good care.
Advocacy can be formalised through a power of attorney. Depending on the scope of the power of attorney this can give access to bank accounts, allow payment of bills and in some case authority to make medical decisions on behalf of their relative or friend. A solicitor can advise on how to set this up.
Kay goes with her brother to hospital appointments and sometimes has to speak up to ensure that he is properly cared for. Having power of attorney gives her authority to act more widely on his behalf.
Alice thinks it is a comfort to her friend that she has shared power of attorney with his father. For her, this legal authority helps in being his ambassador.
Advocacy for the person with MS sometimes came from outside the family unit. Patience’s MP arranged for her husband to have a paid advocate in her dispute with social services about funding for his care home placement.
Some people we spoke to worked with, or established, groups or campaigns as a way of being involved in fundraising or raising awareness of MS and carers needs. Several people had taken on formal administrative and fundraising roles of local MS support groups or carers organisations. Mike is a member of the online ‘welcome team’ for a group called ‘Shine on Scotland’ which campaigns for treatment and cure for MS. Norma set up a group, named after her son who had died with MS, to raise awareness of MS in the black community. On top of his activity for the MS Society, Tony campaigned politically for the continuation of Carer’s Allowance beyond the age of 65. Jean’s group got their local MP involved in a campaign to fund an MS nurse post. Sarah became a young carers representative for her local MS group when she was 10 years old and has been involved in raising awareness of young carers needs ever since. Being in a group can be a source of support, encouragement and friendship.
Family and friends often get involved in campaigning and fundraising for MS charities. People with MS varied in the extent to which they wanted their relatives to be active on a broader scale. Tony’s wife eventually wanted him to stop being so active in the MS Society when her condition deteriorated and she felt that nothing more could be done for her.