The sandwich carer, disability equipment and the OT maze
The following piece was written by Jeanne Carlin*. Jeanne is a social worker, and is also the mother of a disabled daughter and a carer for her parents. Jeanne calls herself the ‘sandwich carer’ and writes:
“In my first blog I said one of the ways I cope with the stress of my caring responsibilities is to try and see the lighter side of situations. When it comes to getting equipment and adaptations via the occupational therapy (OT) service this is definitely my default setting. I am therefore writing this blog slightly tongue-in-cheek, it is not meant to insult any readers from the OT profession but it serves my need to wonder about how a service has become so complicated for those of us who need to use it.
For me the first hurdle I face is to work out if I need an Occupational Therapist employed by health or one employed by social care. Recently I discovered that my parents were both sleeping in their recliner chairs as they can no longer easily get on and off their bed. So when my mother went to see her GP about the x-rays of her back I suggested she ask for a referral to a health OT for an assessment of their sleeping arrangements. (I have somehow assumed beds are the domain of health.) Coupled with this they need to be assessed to get on and off the toilet. In the past it is the social care OT who has provided grab rails and bathroom equipment. I now lie awake at night wondering if beds are health are toilets and bathrooms social care or do we really need two different OT’s involved. I wonder if there is a rule book somewhere that delineates which equipment / rooms in the house/ bodily functions belong to health and which belong to social care. Or I should ask the question does it matter?
In the cold light of day, of course it matters. Health is free at the point of delivery and social care is not. But then there is the joint equipment service, which I thought had been introduced to deal with the confusion as to who provides what. As I understand it, and I may be wrong, this provides pieces of equipment which cost less than £100 and can be accessed by either health or social care. The difficulty is how do I know before the assessment whether the equipment needed will cost less than £100 so I am left with my original question do we need a health or social care OT. This morning matters became further complicated when my mother informed me that the CPN was referring my father to an OT who specialises in dementia. I now have visions of 3 OT’s all assessing different rooms or perhaps the same rooms of my parent’s home. How did the situation become so complicated or is it just complicated to those of us on the outside?
During the 30 years of my daughter’s life I have become used to OT’s, their technicians, equipment reps and surveyors traipsing in and out of my house. My daughter attended a special school which was just outside the boundary of the city we live in. This meant that she had 3 OT’s – a local authority OT for equipment at home, a different local authority OT for equipment at school and a health OT. This lead to some bizarre situations, particularly if we needed a piece of equipment which had been made for her at school made for her in the home. It involved 2 OT’s and 2 technicians – a simple ladder back-chair took so long to co-ordinate and make that by the time it arrived (9months later) she had grown out of it. Whenever, people used to say that there was a national shortage of OT’s, I used to smile and think, well that is not surprising my daughter has three.
We are in the midst of having our home assessed for a more suitable bathroom arrangement for my daughter. This process has become akin to the game of ‘Chinese whispers’ that I played as a child (the final message whispered along a row of children bears no relationship to the original message). This process started with a visit from the health OT as my daughter’s scoliosis had progressed so she needed all her seating reassessed. It was agreed that instead of the tilting commode / shower chair she needed a moulded commode / shower chair to support her spine. A number of reps then followed bringing equipment to try out and the outcome of that was we would need a new bathroom as the turning circle for a moulded chair was larger. The health OT then submitted a report to the social care OT, who visited and agreed that is what was needed. She then went off and spoke to the surveyors in the city council and came back for a visit with a surveyor.
By this stage the surveyor was convinced that what was needed was a tilting moulded commode and that we would be wheeling her around the house in a tilted position. No amount of talking could convince him that the messages had become muddled so he walked around the house measuring access and turning circles that would require that we live in a sports stadium! He proposed knocking down walls that we had no desire to see knocked down and in the end agreed that he would draw up some plans but he would come back for another visit with the health OT who had started the process and the rep from the equipment company. Perhaps when we have all the appropriate people in the same room at the same time we may get some sense – but what a lot of wasted time and left us asking the question – who’s house is this, anyway?
It has taken us over 6 months to get the lounge chair that was needed during this reassessment process. The hold up was the fact that the new clinical commissioning group could not agree a process for approving the funding and then commissioning a private company to purchase the chair. Strangely enough, it was all sorted out the same week that I made a complaint! The light on the horizon is that I have now been told that as my daughter is 100% continuing care funded and has a personal health budget I can get her equipment approved and paid for via her budget. A new route to try with the purchase of her commode?
I could go on forever sharing the stories I have about equipment and adaptations, but wanted to give my readers a flavour of the dilemma of so many carers and disabled people when trying to work out whether one needs a health or social care OT. Government talks about the integration of health and social care and I share this dream in relation to the OT services; but I would like to ask when is this going to happen as I would like to stop lying awake at night wondering whether it is health or social care.”
Jeanne calls herself a sandwich carer. Why ‘sandwich carer’? For the past 30 years I have cared for my daughter Erica, who has profound and multiple impairments as well as some very complex health needs. She continues to live at home with my husband and me with a very good mix of support, which enables her to live a life with some independence. Now for the sandwich part. In the past few years I have taken on increasing responsibility for my parents who live about 10 miles away from me. This has included holding power of attorney for both financial matters and health and welfare decisions. My father has dementia – probably Alzheimer’s – and my mother is physically disabled.
I consider myself as having a lot of expertise in the disability field having lived with my daughter, but also as a freelance social worker/ consultant for the past 12 years working as a writer, researcher, trainer and consultant. I have been active as a campaigner both locally and nationally. However my entry into the world of dementia has made me feel totally inexperienced and at times very confused and inadequate. Although I know my way around the health and social care systems (if they would just stop re-organising them every few years) I don’t know my way around dementia.
I have struggled not to argue with my father when he insists that his parents, and even his grandparents, are alive. I have struggled not to lose my temper when he phones at 2am to ask if I will come and collect him to take him home (we don’t know where that is). I have heard others say ‘just go along with him’, ‘agree with what he says’. It just ain’t as easy as all that. As my mother’s arthritis progresses as she can do less around the house I struggle not to resent their reliance on me. Our roles have been reversed and I have become the parent to my parents whilst at the same time having care responsibilities for my daughter.
Read Jeanne’s BlogSpot here