“We’re terrified what will happen when we die”

MS Society research shows carers pushed to breaking point

New MS Society research shows half of family members and friends supporting someone with multiple sclerosis (MS) are not getting the support they need1, and one in three (34%) have given up work as a result.1 Nearly all respondents (90%) said their health and wellbeing had been negatively impacted because of their caring role,1 yet only one in six people of working-age had been offered enough support to stay in employment.1

With a third of people with MS not getting adequate help from the state to complete activities like washing, cooking and cleaning,2 the pressure is increasing on loved ones to provide free care.

41% of family and friends who responded to the survey said they are now providing 35 hours or more of unpaid care every week.1 This is the equivalent of a full time job for which a care worker would be paid on average £14,742.3 One in six said they provide over 90 hours of care every week.1 Recent research from NEF Consulting shows that, in England, unpaid carers giving up work early to provide this support costs £3-6 billion in lost tax every year.4

Clare Cowling, 69, lives in Buckinghamshire. She and her husband have been supporting son Trevor, 38, since his primary progressive MS diagnosis five years ago. Today, Trevor is paralysed down his left side, cannot walk more than 10 yards, and uses a wheelchair.

Clare said: “I left my full-time job when Trevor was diagnosed and found part-time work so I could be at home more. I now spend around 70 hours a week washing, cleaning, cooking, driving, dressing sores and tying shoelaces. Trevor feeds himself but can’t cut up his food. He’s starting to have trouble going to the toilet too, and I don’t know what will happen when he needs help with that.

“He used to have a volunteering job, but they sacked him when his disability got worse, saying they didn’t have the right facilities. There isn’t a lot of work for people who are disabled and can’t use computers. He doesn’t go out any more and I can’t remember the last time I had a break. There needs to be two of us at home at all times in case he falls. Going to work is actually my break as it means I can get out of the house and stop worrying for a bit.”

She continues: “I’m amazed by how much the care system has done to help, but it would collapse without people like us propping it up – and right now we’re pushed to breaking point. My husband is in his 70s and I’m nearly there myself. Because of our age it’s becoming increasingly difficult to do things like lift Trevor, and get his wheelchair in and out the car. Thinking about what might happen long-term is one of the most challenging aspects of caring. We’re terrified what will happen when we die, and I know my son is too.”

Fredi Cavander-Attwood, Policy Manager at the MS Society, said: “The adult social care system is under more pressure than ever and failing to provide the support older people, disabled adults and their families need. Residents of the UK now have a 65% chance of providing unpaid care in their adult lives – massively impacting their employment prospects, financial stability, and health and wellbeing.

“More than 130,000 people live with MS in the UK, and it shouldn’t be assumed that their family and friends can plug the gaps in our broken social care system. We need a fair, effective and properly funded care system across the UK so no one is forced to give up work to ensure their loved one gets proper support.”

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