Tag Archives: nhs policy

Cystic Fibrosis – a good news story?

I do love it when I hear a good news story.  The medical breakthrough, the new therapy that’s going to save lives, or if not, at least improve them.

There was one such story doing the rounds last week.  A new gene therapy for Cystic Fibrosis, a debilitating lung condition which leads to an average life expectancy of 41. In the trial the lungs of patients who took the drug improved over the period by about 3% while those who didn’t take the gene therapy saw their lungs decline.

We were introduced to a lively 16 year old, Mary, on the Today programme on Radio 4. She’d taken part in the trials without knowing whether she was part of a control group or actually taking the drug.  Within a month she’d noticed an increase in energy.  She was able to do more school work and activities with her family.  Her mum, Debbie, said it was ‘like a magic trick’ and pointed out, by the time the trial ended, her condition had improved so much that they could leave her wheelchair in the car.

Brilliant.  Fantastic.  What an amazing good news story.  Except of course it turns out it’s not such good news for Mary.  Yes it’s a significant breakthrough, but in scientific terms, the effects were ‘variable and modest’.   Her doctors  can’t just put her on the drug without more research.  And the universities that did this research have run out of funding.  Prof Eric Alton from Imperial College London says the group is “in negotiation with a large number of companies to say we need a rapid study”.

But rapid isn’t exactly the word I would use.  Even if one of the pharmaceutical companies takes it on, the earliest Professor Alton can see a study happening is ‘the end of next year’.  18 months away.  And that’s just the next study.  It’ll be at least five years until the therapy will be available to patients.

Isn’t it time to speed this stuff up a bit? Mary’s cystic fibrosis  is getting worse.  Since she came off the trial she’s gone downhill, had recurrent infections, been hospitalised.  And yet it’s a full year and a half before another study might even start.

We can all imagine why.  Endless emails, meetings, reports which take a month to write and then another month for someone to read, medical bodies to consult.  And of course we’re relying on a pharmaceutical company deciding the drug is commercially viable.  That the drug will make enough profit.  That the NHS will be able to afford to buy it.    All this talk takes time.  Meanwhile  Mary is struggling to breathe.

I’m not a red-tape whinger.  Sometimes what others call red tape, I think is sensible health and safety.  But I object to a system which seems to accept this type of delay.  What can’t the Medical Research Council, the National Institute of Health Research and the pharmaceutical companies get into a room together next week and work this out?  Let’s start the next trial next month not next year.

Debbie, Mary’s mum ended her BBC interview talking about the second study.  “Anything that can be done to help the second phase is …….” She paused, straining to find the right word.  “Paramount” is what she came up with.   But what word do you pick to describe the urgency when you’re looking at your 16 year old daughter gasping for air?

The Manchester Health service

Of course she’s been posturing under the wrong name for years.  The NHS.  National Health Service. With her separate clinical commissioning groups, her postcode lotteries,  her different ways of doing simple tasks between one hospital and another.  I always thought she should be called the ANHS. The Almost  National Health service.

And now it appears she may need another name again.   Or part of her does.    The MHS.  The Manchester Health Service.  A bigger split, more formal, making the care you receive from the NHS dependent even more on where you live,  rather than what you need.

There are lots of laudable reasons for the plan.  I’m in no doubt that better links between social services  and the NHS are long overdue.   There is a common conversation on wards between staff,  elderly patients and their families.  As you try not to listen through thin green curtains, you overhear again and again the problems of finding somewhere for Grandma to live because she’s now too frail to go home.

Better cohesion between the two services could really help in managing long term conditions like dementia and heart disease too.  No wonder George Osborne finds this ‘really exciting’.    Local people having more control over the decisions that affect their lives.  Or would that be local politicians George?

I’m uneasy.   Us patients know that we already have to endure problems in our health care because of  a lack of cohesion between different parts of the NHS.    We know if we go to one hospital rather than another, we’ll get a different level of care, different systems, different food.  Our doctors rely on snailmail to pass on vital information about us from one part of the NHS to another.  Experienced  nurses on our wards tell us they can’t give us our pills because they haven’t been through the training for that particular hospital trust.   We’re promised joined up services in Manchester.  Shouldn’t we be working on joining up the NHS in the UK first?

And there’s another problem.  What about those of us – and we are many – who have to travel to the Big Smoke because our treatment and care is too complicated for the hospitals and doctors where we live?   Will we be as welcome?  As budgets inevitably tighten, will our right to expensive treatments be discussed in the light of whether we pay council tax in Manchester?   Will the ‘local people’  making  these decisions be happy to open their doors to costly patients across the country when  their electorate are baying for them to improve local care?  I can see the election slogan now.  Manchester Services for Manchester people.

I have family in Wales.  A few years ago they were all trumpeting their free prescriptions.  Now they wonder whether it was worth it.  They complain of long waits for hospital appointments and inefficient care.  They try to arrange treatment across the border.  They’re not so sure local power to local people as far as the NHS is concerned is working for them.

I am not against a Northern Powerhouse but this plan concerns me, not least because of the speed in which it is being introduced.  In just over a year, full devolution of health and care services in Manchester will be in place, and yet all parties seem to agree the details of how this will work are still very sketchy.

And to cap it all, just a year later, Manchester people will be voting for a new mayor.    A chance for some bright politician to make radical plans for that £6billion health and social care budget.  Perhaps even to come up with a smart new name for the service.   I like the old one.  The National Health Service.

It’s time to talk about the NHS

So ’tis the season when those who run our country fight over the NHS. Like a girl ignored all year by the good looking boys, she is suddenly surrounded by suitors offering to take her to the prom. ‘I care about you more than him,’ ‘No I’ve always cared about you!’ ‘I care more! He hasn’t got enough money to look after you anyway!’

As patients it’s almost impossible for us to make sense of what’s on offer. GPs available seven days a week versus a guaranteed GP appointment within 48 hours? Erm.  I’ll have both please.  £400million versus £2.5billion?  Oh I’ll go for the £2.5billion  please….. but hold on a minute, where is the money coming from?

We look helplessly from one offer to the next while those really in the know warn us that none of these plans will stop the crisis we’re heading towards.   The NHS in her too-tight dress and faded corsage is looking for a hero to fly in and rescue her.   She needs radical action, a combined effort by all her suitors and some new shoes so she can dance all night.

She’s probably not going to get it. As much as the politicians try, they are bound by us.  Patients on the one hand, tax-payers on the other.  We all want a wonderful NHS, we’re not all willing to pay for it.

But at least we are giving the old girl in the corner some attention and that has to be good.   Maybe, just maybe, we could turn things around for her. She is still well loved, trusted and utterly brilliant to most of us on most days.  We don’t want to lose her.   Maybe a fierce election debate is just what she needs.  A national debate where all of us, patients, policy makers and staff demand more for the NHS.  One where we agonise over choices while being inspired by new ideas.   It shouldn’t be about party colours.  It should be about keeping the NHS at the party.  Bring it on.