A sorry tale

As a child I spent my third birthday on an isolation ward with polio, an iron lung – which thankfully, was never needed, waiting in the room next door. However the resulting paralysis of both legs and my spinal muscles, whilst not preventing an active and eventful young adulthood, is now making fresh inroads into my strength and resilience, leading to postural changes and new ways of ‘handling’ myself. Luckily I’m well versed in such matters and have lots of peer support to draw on. However, it’s not easy negotiating this new terrain, and the structures and institutions supposedly there to support us do seem at times to struggle to understand and deliver.

For just over a year now I’ve been engaged in ‘negotiations’ with my Clinical Commissioning Group (CCG) over funding for weekly hydrotherapy. I’ve actually been paying – or ‘self funding’, as the current jargon has it – for weekly hydro for five or six years. Until I took medical retirement two years ago my employer contributed three working hours a week to my hydro time, recognising the beneficial impact it had on my ability to deliver a demanding job. Having retired and now living on a pension rather than a Chief Executive’s salary I thought I would seek payment of my hydro on the NHS.

And the hydro has made a positive difference, despite post polio syndrome being a progressive condition. However, this does not mean it has made me ‘better’. It does mean that it has helped my flexibility, has greatly reduced the shooting muscle spasms in my back, has dealt with intermittent problems with neck, shoulder, and/or hips, and contributed massively to the fact that I am still ‘self managing’, i.e. I don’t need any physical support on a daily basis to live my life, despite a high level of impairment. But whilst it hasn’t made me ‘better’, it’s almost certainly stopped me from deteriorating as I might otherwise have done. And this, to me, is the point of the hydro – it keeps me more flexible, more mobile, more pain-free and more able to ‘self manage’ than might otherwise be the case. Surely this is a prime example of delivering a holistic, wellbeing, preventative agenda that brings together health and social care?

Why then does my CCG appear so reluctant to fund this treatment? To be fair, although we started the application in the spring of last year, they agreed in January of this year to fund twelve (yes, twelve) sessions. However, they have cautioned against ‘starting’ the provision and instead have sent a succession of ‘and another thing’ letters requiring ‘additional information’ from most of those involved, though rarely from me. And why they couldn’t have asked for this information up front is beyond me. As every new amount of information is delivered to them I picture them having a meeting and saying to themselves ‘what else can we ask for?’

The latest requirement is for information from my hydro provider, including
* Benefit in terms of functional wellbeing outcomes
* Clear improvements in basic daily activities such as time taken to get up and dressed, extended time spent on frame rather than wheelchair.
* Other improvements, rather than number of spasms etc.

These latest requirements are problematic for a number of reasons:
* Functional well being outcomes are not defined, therefore hard to address,
* Extended ‘time spent on frame’ is a nonsense for someone who neither walks nor stands,
* ‘Time taken to get up and dressed’ – honestly? Currently an hour if I shower and wash my hair; ten minutes if I’m feeling tired and slovenly. What on earth do they think this is going to tell them?
* ‘Other improvements’. What??

So although they have agreed to fund twelve sessions, they haven’t yet authorised the payment, if you see what I mean? I’m afraid the only conclusion I can draw is that the CCG are doing two things here – avoiding a commitment and dragging out the decision- making process, probably in order to conserve their budget and avoid setting a precedent. Already this process has lasted over a year: it has involved assessment at a post polio Centre of Excellence in London, my GP, various consultants innumerable letters back and forth, assessments, reports, and the inevitable ‘additional information’. It would be instructive, I think, to cost out this process. And this is not to mention the aggravation / stress / anger / incredulity that I personally have had to deal with over the last year, as yet another letter pops through my letterbox.

Are we surprised that the Better Care Fund, a ‘government policy intended to stop the NHS from becoming overwhelmed has been delayed after a confidential Whitehall review concluded it would not work as hoped.’ This sorry little tale makes a nonsense of policy discussions about joint health and social care provision, personal budgets, wellbeing and prevention, and self directed support. Their agenda is clearly about ‘improvement’ – commonly called ‘getting better’, but barring a miracle it’s not going to happen. What is happening is maintenance, and avoidance of undue deterioration, which is exactly what the assessment they required told them, but which they seem reluctant to commission.

The CCG bureaucracy may yet prove victorious. Though I haven’t quite given up yet, I do have other battles to fight!


About lorrainegradwell

Active in the disabled peoples' movement since the early 80's, stepping back a bit now but still speaking up and still looking for independence and an end to discrimination.
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