Monthly Archives: July 2013

Part 2: The sandwich carer, disability equipment and the OT maze

Posted on: 16/07/2013 | Categories: Case Studies, CECOPS General, Service User experience, Uncategorized

The following piece (Part 2) 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:

I have been aware for a couple of months that my parents were both sleeping on their recliner chairs in the living room – my mother because she had hurt her back falling and my father because he cannot understand that he could go upstairs to sleep if my mother was not there. I assumed the situation with my mother was temporary and once her back was better (she was receiving weekly treatment from an osteopath) she would return to sleeping in her bed.

On the weekend of the 18th May 2013 I took my mother down to London to a family event and realised that the bed situation was not a temporary one as she was struggling to get on and off an ordinary bed. As she was due to go to her GP to get the results of x-rays on her back (22nd May) I suggested that she ask the GP for a referral to an OT to get a profiling bed. I was also aware that my father was struggling to get up and down from the bed which he sat on when he got dressed so suggested they probably both need to be assessed.

My mother found she had a crushed vertebra when she went to the GP and he agreed to a referral to a health OT. At this time I was also told they were struggling to get on and off the toilet upstairs and in the past social services had dealt with the toilet issues. Then the situation became further complicated when the CPN arrived for his regular visit and said the dementia team had an OT and he would make a referral to her.

By the 31st May we had not heard from the OT so I phoned the CPN and we agreed it would be silly to have so many OT’s involved. He spoke to the dementia OT who offered to do a visit the following week (5th June).

I attended that visit at my parent’s house. The OT stated very quickly after getting in the house that she could not assess my mother; she could only assess my father, who has dementia. She carried out an assessment on my father for a bed and assistance getting on and off the toilet. She then stated she could not order a bed as that was done by the district nurses in this area of the country. She did offer to raise the bed onto blocks to make it easier for my father to get up and down. (I very nearly asked if she was intending to only raise my father’s side of the bed!!!!!). She offered to provide a rail surround for the toilet.

She then told my mother to phone her GP and ask for a referral to the Crisis Intermediary Treatment Team – as she could see that my mother urgently needed a bed. We did this immediately and the GP made the referral on the same day (5th June) and my mother had a phone call that day to say they would get back to her by the end of the week with a date for a visit.

On Monday (10th) we were told an OT would do a visit on Friday, 14th June at 9am (10 days after a crisis referral was made). Time was changed to 3pm the day before and the OT did turn up at 5.15. She very quickly agreed that my mother needed a profiling bed urgently, but stated that she did not have a referral for my father so would need to contact the GP and find out who was sorting that out.

We heard nothing from any of the professionals during the week of the 17th June and because I was away I was relying on my mother to follow up the beds. At this stage my father developed leg ulcers – not helped by the fact that he was sleeping in his chair with his legs on the ground. A nurse was now coming in 3/4 times a week to dress his legs. On the 25th June I spent the afternoon at my parents and was determined to sort out the problem.

I started by phoning the community equipment company who do the deliveries and was told there was no referral. Then I phoned the district nurse team who told me it was still with the Crisis OT. I told them that as it was a crisis referral it should not take 3 weeks to get a result. The woman agreed to phone me back. After 2 hours I phoned again and was told that the district nurse would visit on Friday (28th) to do another assessment. She was too busy to visit any earlier. I explained that we would be on holiday from the 5th July and I needed the beds to be delivered to my parents before this date so that I could sort out their rooms as they were not able to do this.

The visit took place on the 28th and we have been told the beds will be delivered sometime this morning.

The added complication is that the dementia OT also told us that sometimes if there is a stairlift the outsourced equipment provider refuses to carry the beds upstairs as they claim it is unsafe to carry anything past the stairlift. She therefore advised that my husband or I need to be there when the beds are delivered so we could carry then upstairs as the equipment provider is responsible for putting them together and if we don’t carry them upstairs they will assemble them in the living room. I await to see what happens this morning!

We still need to sort out the toilet as the surround was too small for my father who is rather large – so yet another OT – to arrange a visit with!

Read Part 1 of The sandwich carer, disability equipment and the OT maze HERE

*About Jeanne
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.

Follow Jeanne on Twitter: @jeannecarlin

Read More >

The sandwich carer, disability equipment and the OT maze

Posted on: 15/07/2013 | Categories: Case Studies, CECOPS General, Service User experience

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.”

*About Jeanne
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

Read More >