Multiple Sclerosis (MS) is usually characterised by periods of relapse and remission but for some people (around 15 %) the type of MS that they have is more progressive and debilitating. Some people may need support with everyday activities, for example they may be less mobile, need support with shopping, cooking and other housework tasks. If their condition has relapsed or deteriorated they may need extra support with personal care like washing, dressing, eating and using the toilet. Relatives and friends often provide this support and for some it can have a significant impact on their own health and quality of life. This is particularly so if the person they support needs significant or total care. In these circumstances, local authority social services or NHS primary care services must provide an assessment to help determine what the care needs are and how the family carer can be supported. Some of the services that could be provided may be charged for.
Some people reported that the person they cared for had received good care from care workers at home, though it was sometimes ‘limited.’ Alice thought the paid carers looking after her friend were good at practical care but often neglected emotional and psychological care; she was surprised and pleased one day to find they’d put music on that she thought he’d like. Some people said care workers weren’t always reliable or weren’t allowed to lift.
When the regular care workers were not available and relief staff came in to look after his wife, Eric said they would sometimes do irritating things like leave the hoist in the wrong position, or leave bottles of lotion where they could easily spill and stain sheets or pillows. Mully found that what she called the ‘A team’ of nurses who visited her husband daily for 2 weeks after he came out of hospital were ‘super-efficient.’ The ‘general’ care workers who followed were well-intentioned but untrained and inexperienced.
Care workers were so unsure about how to manage her husband’s suprapubic catheter that Mully decided to learn how to look after it herself.
Little things that care workers don’t always pay enough attention to could annoy Eric a bit.
Tony was very satisfied with the daily care from the social services. He thought they sometimes suffered from management problems but had no complaints about the ‘grassroots’ workers. Over the years he needed extra help and had built what he called a ‘support group’ of people who would sit with his wife while he went shopping or played golf, and who would help with jobs in the garden:
Tony describes how he has had to work at getting help and support to care for his wife.
Anita found it upsetting that many years ago people were looking after her mum who were not looking out for her best care and whom she couldn’t trust.
Sometimes the need for care at home increased over the years. For John Z’s wife it began with visits from the district nurse to give her an injection. As her condition got worse she needed visits to attend to her urinary catheter, to give enemas and, eventually, daily help with washing, dressing and getting out of bed. After eight years John could no longer look after her at home, and she moved to a nearby nursing home. John visits her every day and is very satisfied with the care there.
Occasionally, there was conflict with care providers. Paul Z had a series of problems which ended with him making a formal complaint about the quality of his wife’s care. He was pleased that his complaint was upheld, but the experience was very stressful and exasperating. Things improved and the paid carers were willing to do more when his wife became eligible for NHS ‘continuing care’ at home.
Paul thinks that the bureaucracy of care management does not always treat his wife as an individual.
People had different approaches to forming relationships with the care workers who came into their home. Tony and Eric both deliberately keep good relations with them. Sarah Z didn’t like the ‘total invasion of privacy’ which came with having care at home for her husband. She distanced herself from the care workers to some extent. Alice tries not to make bonds with them, although she thinks most of them are fantastic, especially at giving physical care which she knows she could not do.
Sarah relied on a system of written communication with care workers to keep track of what everybody was doing, but when they were in the house she tried to keep some private space.
Alice feels that she has an awkward relationship with her friend’s care workers, who don’t know the history of their relationship.
Funding arrangements for care at home varied widely. Alice’s friend received 24 hour care at home, in what she said was almost like an intensive care unit, fully funded by the Primary Care Trust. This was constantly under review, with many interviews to assess his needs. However, Eric had to pay for nearly all his wife’s care at home.
Others got financial support from the local authority, sometimes under the ‘direct payment’ system where they received money from the authority which they used to pay the care provider directly. Tony had sometimes found this useful. Paul Z had rejected the offer of using this system, because he wanted the lines of responsibility for care provision to remain very clear.
Tony was unsure at first about the system of direct payment. But he has found that paying for care services himself, with money supplied by the council, gives him more flexibility.
Eric pays for all the twice daily help his wife receives from a local care company.
Norma received funding from the Independent Living Fund to enable someone to come during the day to read to her son or take him out.
Even with regular help, caring for a relative with MS at home can be time-consuming and exhausting. In these circumstances, the opportunity to have periodic breaks from caring was important and vital to some people. John X’s wife has had a few days respite at a local hostel. Robin’s wife was having respite time 3 or 4 times a year but this was no longer available. This is vital recuperation time for Robin who finds the physical effort of caring for his wife quite a burden. It is now under threat because of changes to funding. Tony has had a carers’ assessment and is granted four weeks respite each year.
Regular respite care has really mattered to Robin because it gives him temporary relief from the task of caring for his wife.
Access to such ‘respite care’ is not always easy, though. Sarah Z became desperate for a break from caring for her husband. She felt that health and social care professionals responsible for her husband’s welfare did not acknowledge her needs as the main carer and she needed to change GP before she could get respite care. Several people expressed concern, even anger, at the MS Society’s decision to stop providing respite care through its own centres. Betty believed that the local authority was spending funds supposed to be ring-fenced for respite care on other things. In Jean’s area the local hospital which provided respite care has closed.
Sarah really wanted to spend some time alone in their home but her husband didn’t want to go away. Eventually, she achieved one week respite every three months.
Betty talks about a pot of gold’ that the council has to fund respite for carers. Her carers group put in a bid to administer the money in the hope of ensuring access to respite.
Sometimes personal factors affected opportunities for respite. Sarah’s husband was ‘bad-tempered’ about it; John K’s wife won’t go into respite care because she doesn’t want to be with other disabled people. John gets a break occasionally by going away on holiday by himself, for which he says people criticise him. Dave won’t look for respite because he says it wouldn’t be fair on his wife if he ‘left her in a home for a week while I went off on my own – it’s not the way we do things.’
Some people were so used to caring themselves that they found it difficult to let go while their relative was in respite care. Norma visited her son daily to feed him and get him ready for bed; Mully and her husband are ‘so closely bound together’ that she ‘starts to pine’ after a few days, so they take less respite than they are entitled to.
For a few people with advanced MS, long-term care in a nursing home or hospital became unavoidable. Both Kay’s brother and John’s wife live in a nursing home and are very well cared for. Patience’s husband went into a nursing home when he got a pressure sore that was difficult to treat at home. She decided to bring him back home when she felt that he wasn’t receiving good care. That led to a complex dispute over the funding of his care.