● The name of the service user has been changed.
Donna Parrish, 42, is a mother of a one-year-old child. She has multiple sclerosis, which was diagnosed after the birth of her child. The baby’s father left her when Donna told him she was pregnant: the baby wasn’t planned and the father accused her of deceiving him over her use of contraception. She also suffered post-natal depression. She has difficulty coping with daily household tasks and with caring for her child, because of her disability and general tiredness. She lacks confidence in going outside. She does not want strangers in her home and so has temporarily moved in with her 80-year-old mother.
Donna’s mother has her own health problems and finds mobility difficult. She desperately wants to limit any time she spends out of the house, which means that both are increasingly stuck in together with the baby. Donna’s mother also has occasional bouts of forgetfulness around her personal care – which Donna finds “disgusting” and stressful to deal with. Both are under strain trying to manage and Donna is struggling to adapt to her new living circumstances. Tensions are fraught between the mother and daughter. Following a brave trip out to the local shops Donna suffered a violent headache causing nausea and vomiting and which also affected her vision – she thought she had gone blind. Now she dare not leave the house and orders her food online.
PANEL RESPONSES (Derbyshire Council – Physical Disabilities team)
Carl O’Riordan (social worker, sensory)
As a social worker allocated to Donna, her needs would be my primary, but not only, concern. This situation involves three generations of a family, all living closely together, each with inter-related and separate needs.
Donna has had much to deal with recently. She has gained a child and become disabled. She has lost her partner, her home as well as much independence and confidence. We are told that Donna has suffered post-natal depression. As can often happen, this medical label may have obfuscated other root causes of emotional distress that may still need to be addressed.
As Donna is wary of strangers, I would strive to build a relationship based upon respect, openness and trust. I would complete an assessment with her, as well as looking at her needs and goals, and planning ways to overcome barriers to independence. With an occupational therapist, we could explore strategies to enable Donna to regain autonomy with everyday tasks, and confidence to leave her house. Donna may benefit from direct payments, enabling her to be assisted by people she knows and trusts. With this support, Donna may have the freedom to choose to move out.
I would also be conscious of the needs of her child at a critical stage of development. I would have a duty under Fair Access to Care Services, the national eligibility criteria, to assess whether there are any barriers to Donna carrying out family responsibilities. Many disabled parents feel isolated and on trial, perceiving a need to prove themselves as good parents, particularly to social workers. This experience is highlighted by the Disabled Parents Network, a supporting and campaigning national organisation, run by and for disabled parents, which I would provide information on.
Also, I would explain to Donna’s mother that she is entitled to a needs-led assessment, as well as a carer’s assessment if she is providing regular and substantial care. With appropriate support, Donna’s mother may regain independence and dignity with her personal care needs, benefit from strategies to aid memory and gain greater freedom to leave her home. This may reduce Donna’s stress levels, and consequently benefit her child.
Julie Heath (Disability services manager)
Donna has undoubtedly had a very difficult year. Not only was she left while pregnant to bring up a child as a single parent, she has suffered with post-natal depression, been diagnosed with a deteriorating condition and is also increasingly taking on the role as carer to her mother. Any one of these situations would present as a challenge by itself.
Perhaps the challenge that she needs to address first is that of adjusting to living with multiple sclerosis. As a degenerative, neurological disorder this condition can affect people in many ways and its progress can differ greatly between individuals. Donna will need to acquire information from her neurologist as to how she may expect the condition to affect her life. She may find it useful and reassuring to obtain support via local groups or her nearest Centre for Inclusive Living (CIL).
Donna will benefit from an occupational therapy assessment. This would take into account any adaptations and technical aids that would enable Donna to fully access her home and promote her independence. An occupational therapist would also be able to offer advice and solutions around practical issues related to parenting tasks.
One major issue to consider will be Donna’s housing needs. At the moment she is temporarily living with her mother an occupational therapist would be able to help with a housing application by providing a community care assessment if Donna wanted public sector housing.
Donna’s mother needs to be assessed in her own right. From the information gleaned one wonders if she is exhibiting the early stages of dementia? Is she getting sufficient support around her health needs? Sharing her home with Donna and the baby may be exacerbating her health problems.
Donna needs to be aware of what options are available to her in all aspects of her life. An outcomes-focused assessment which would take account of her aspirations would be one way of helping Donna put her situation into perspective and set out achievable targets.
THE USER VIEW
In the space of just over a year, Donna has experienced some of life’s most stressful events – the birth of a child, finding out that she has a degenerative illness which will probably lead to disability and an early death, post-natal depression, the end of a key relationship, moving home and coping with an increasingly frail elderly parent. Any one of these would be hard enough to come to terms with, let alone manage successfully.
Most of us, while we are still healthy, active and working, assume that we won’t have to cope with personal disasters, so we’re just not prepared to deal with illness and disability when they come along. When they do occur, it almost always involves loss of something: relationships, health, independence. And just like any other loss we experience, we tend to respond by going through the five stages of grief identified by Elizabeth Kubler-Ross: denial, anger, bargaining, depression and acceptance which means that our ability to cope with everyday obstacles is impaired as well.
When I became disabled, I was also faced with the break-up of my relationship, the loss of my home and the risk of losing contact with my children – all within a matter of weeks. I experienced all of the emotions of grief, eventually.
At the time, the same circumstances robbed me of many of my resources, just when I needed to be at my strongest and most clear-headed. In a nutshell, it’s hard to think clearly about what’s for the best when in this much difficulty, and it’s hard to listen to good advice, because, if Donna is like most people, she probably just wants the nightmare to stop, to turn the clock back to a time when everything was easier to cope with.
It’s clear that all three people need individual assessments – Donna, her baby and her mother – because all three are at risk. They have needs which may conflict with each other’s, and some of which – such as difficulties in leaving the house – compound the problems, both practical and emotional.
If they’re going to work their way through their difficulties, Donna and her mother need someone who they can trust, who can tell them that there are practical solutions to each of their problems.
They need help to understand that each solution might not be exactly what they want, but is aimed at easing some of their present difficulties they may not be permanent solutions – there are few magic wands – but each step may help make things more bearable, allowing them, and the social work teams, space to plan for a manageable future.
But first of all, Donna needs to talk to her GP, if not a neurologist, to find out if her headaches and nausea have anything to do with the progression of her MS.
Simon Heng is chair of the Worcestershire Association of Service Users and writes a regular column for Community Care
This article appears in the 10 May issue under the headline “When everything happens at once…”