The Maze called Occupational Therapy

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.

If you would like to comment, share your experience or answer some of my dilemma’s please comment or tweet.

My illumination

If you have a number of light-bulb moments in quick succession does that make an illumination?  If so, then I had an illumination at 3am whilst trying to sleep in a hotel room, which I was sharing with my mum, on our way to London.  So, what was that illumination? I realised everything I had learnt and knew about being ‘person-centred’ I had just not applied when helping my parents plan for the future. 

My daughter, Erica left school 11 years ago and since then we have developed a comprehensive assessment and a good person-centred support plan, which offers her a diverse and interesting range of opportunities and activities with the high level of support which she needs. Since I started blogging and tweeting (about 3 weeks ago) I have read some wonderful person-centred blogs about older people (thanks to Beth Britton, Ming Ho and Martin Routledge) – yet the penny did not drop! With hind-sight I realise we have been carried away by social services who have applied a very traditional model of support visits to meet personal care and when you need more then it is residential care. Spending time driving with my mum to London and supporting her in a hotel made me realise that this is not what she and my dad want. 

So let me share those thoughts with you.

Last Friday I wrote a piece for Community Care outlining my journey to look for a long term solution to my parent’s living situation. (http://www.communitycare.co.uk/blogs/adult-care-blog/2013/05/do-we-need-care-homes-for-older-people-in-2013-regrettably-yes/)

My main goal was to try and find somewhere that my parents could continue to live together in their local area. As that option was not available at a price they could afford I felt the only answer was for my dad to go into residential care and my mum to remain in their home. 

On Friday my father also went into residential ‘respite’ for the first time. I took my mum to London for a family get-together. When we left Yorkshire at mid-day on Saturday my dad was not happy although beginning to accept his situation.  The main positive for him was that he was given puddings after his meals, otherwise he spent most of his time finding the doors out of the home or sitting in the entrance hall waiting to be collected.

My mum and I had some really good conversations on the way down. I asked her if she could have whatever support she wanted, what would it be. I learnt a number of lessons:

•  She was not ready for my dad to go and live somewhere else (the quest for residential was about my anxiety) 
•  She would like a weekend break about 4 times a year (I expected her to say every 2 months)
• She felt she was wasting money by being forced to have separate calls for her and my dad, as there were some days when a shared half and hour was sufficient
• She would rather spend her money on sitters so she could have more breaks during the day. She would need help to find sitters who would get on with my dad.
• She would like help with meals, but she wanted to make the meals (cooking has always been her thing and she is an excellent cook). This one was interesting. She wants to buy more ready-meals from M&S. (I did wonder of I could suggest that M&S do a meals on wheels service for the discerning older person!)
• Sharing a hotel room made me realise just how difficult she finds getting on and off a bed, going to the toilet during the night and how great the risks are of her falling.

It was only after I had helped her to the toilet at 2am and then could not get back to sleep did the light bulbs start going off in my head and I realised that everything I knew about being ‘person-centred’ I had just not applied to my parents situation. I had been co-opted in to a rather traditional model of care which as a social worker and a parent I no longer believed in.  It suddenly all came together for me and I thought:

‘Put on your campaigner’s hat and turn things around.  Develop a person-centred plan with mum and dad that they want, not what the local authority and health think they should have.  Challenge social care and health to think person centred in relation to dementia and older people.’

OK – so what is my plan of action?

1.  Read their separate ‘service user’ assessments and support plans 
2.  Use my contacts to find a sympathetic manager in social care who I can talk to and lay down the challenge: how do we turn this around and make it person-centred, as that is the government agenda – is it not?
3.  Ask for a joint assessment of my parents as both service users, and my mum as a carer.  This is in the spirit of the new Care Bill – is it not? (See previous blog)
4.  Develop a single support plan which treats them as a couple who have been married for 62 years and yet respects and meets their individual support needs
5.   Then ask for help to find services that will meet their needs outlined in that support plan
6.  As a post-script – arrange a reassessment of their sleep arrangement to ensure that my mother can get into and out of bed safely during the night (at the moment they are both sleeping recliner chairs in the living room – not a good idea!)

   

How difficult can all this be?  I am not asking for ‘the moon’ just what is laid down in law and regarded as current policy and good practice.

Is joint assessment a reality?

For carers the new Care Bill has been called ‘a once in a lifetime opportunity to be truly acknowledged and valued as expert partners in care’ by Dame Philippa Russell, the Chair of the Standing Commission on Carers.  On a ‘good day’ I probably believe she is right; but on an ordinary day I have doubts. These are mainly around, it’s fine to have an assessment but where will the money come from to support carers. And secondly I haven’t had many positive experiences of statutory agencies being creative and flexible enough to see us as a whole family whose needs are unlikely to fit into their tick box assessment methods.

As carers we will no longer have to provide ‘a substantial amount of care on a regular basis’ to qualify for an assessment, so more of us should qualify. The assessment will look at the impact that caring has on our lives and what we want to achieve in our own right. This means looking at whether we want to work, study or even do more socially. Finally, a joint assessment can be undertaken. It is this last point that I want to write about in more detail.

I care for both my adult daughter, Erica who has profound and multiple impairments as well as my parents, my father has dementia and my mother is physically disabled. As a professional I have worked in children’s disability services for many years and have always felt that separate assessments made very little sense. The lives of children and their parents were so interrelated that a true picture of the situation could only be described by looking at the family as a whole.

In relation to my daughter I hold a similar view. Erica lives with us and her care needs and her right to live a life with dignity and independence has a direct impact on our lives and our rights to work, retire, socialise and do things that all other adults enjoy. It is like the ‘yin’ and ‘yang’ symbol, you cannot have the yin without the yang nor the other way round. Our lives are part of a symbiotic whole (a relationship of mutual benefit). I realise that this type of interdependence is not the case for all care situations and for some carers having a separate assessment may be more appropriate.

My experience of being assessed by adult social care has not been a positive one. Our local authority has invented a tick-box assessment and support planning process. I know this is a common ‘invention’ in many authorities, as it is quick and easy to administer. My misgivings about the assessment forms are that they cannot possibly capture and describe the complexity and diversity of my daughter’s needs. So I therefore wonder how they could possible capture a more complex and interwoven picture of relationships and needs if a joint assessment was required.  I fear that unless local authorities throw out their tick-box forms what we will have are parallel assessments of the cared for person and their carer, in other words two separate assessments stapled together and labelled ‘a joint assessment’ .

The situation with my parents is even more complex. They both have care needs in their own rights and receive support as individuals.  My mother, due to her arthritis cannot dress herself and up until a few months ago my father would assist her to dress and undress each morning and night. They were seen as carers for each other as well as service users. As my father’s dementia progressed he became unwilling and unable to help my mother. So he is no longer seen as her carer.

My mother has received assistance with showering for a number of years and has a ‘named social worker’. When my father was assessed the local authority insisted that they have different social workers so that there would not be a ‘conflict of interests’. My mother was seen as my father’s carer by this second social worker and a service user by the first social worker. The outcome was completely muddled and disjointed assessments of their needs and support plans which did not address the issues of interdependence, risk and the need for my mother to have a break from caring.

Fortunately the care agency that go in every morning raised the alarm in terms of risk and the same social worker has now assessed them both, although separately, as service users. They currently receive separate allocations of support by the same worker, paid for by them as two separate calls, which are required to be a minimum of half an hour each. (They never need a whole hour.) I do wonder how we move to the next stage. A joint assessment recognising them both as service users as well as my mother as a carer (and me as a part-time carer and decision maker). Then a support plan which takes into account the issues of interdependence, risk, need for breaks and for us all to live with dignity.

A side issue, but one worth raising: - the new bill states that for a joint assessment to take place both the carer and the person cared for must agree. I do wonder how this will work in relation to my daughter who does not have the capacity to understand the question nor the ability to make the decision. Will we need a best interest meeting to determine my daughter’s view? If so, would my husband and I as her carers be excluded from that decision?

I do hope that the guidance to local authorities addresses some of the issues that I have touched on.  I would really like to believe that joint assessments could be undertaken and that they will not just be separate assessments stapled together.  For me the assessment is so important in establishing eligibility and rights to services and support. The family members I care for need good dynamic assessments in order to be supported to live meaningful lives.

I would be interested in reading and responding to comments.

Why Sandwich Carer?

Why Sandwich Carer ?

I am new to the world of blogging and tweeting but have been encouraged by friends to enter it.  I would like to share my experience and knowledge as well as expand my horizons.

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.

So what gets me through the day? Probably 3 things: humour, having ‘me time’, and enjoying my grandson!  I try to see the funny side of situations or rephrase some to find a lighter side.  My father insisted on having a Facebook page, and one day he informed me that he had signed up to a ‘thing’ so he could contact all his friends.  I could not make head nor tail of what he meant, so I went onto Facebook to find at the age of 81 he had joined a ‘dating agency’! I sent him a message asking if he was intending to take my mother with him on his dates. Once a week I visit my grandson who lives about an hour away and I try to have at least half a day a week when I do things unrelated to caring and work.

I am looking for bloggers to follow and share with, tweeters to tweet and retweet with, so if you would like to comment I would be pleased to enter into conversation.