Category Archives: NHS policies and politics

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.

A visit from St NHS

‘Twas the night before Christmas, when all through the ward,

Not a patient was sleeping, just one who snored,

The charts were hung on the bed end with care,

In the hope a consultant soon would be there,

We shivered cold under thin blankets in bed

While visions of warm toast danced in our head

One overworked nurse and a health care assistant

Ran ragged while machines beeped with relentless persistence,

I lay in bed wondering if sleep would arrive

The night stretched ahead, so hard staying alive

When out in the car park there arose such a clatter

I sprang from my bed to see what was the matter

Away to the window I flew in my gown

Gaping cotton, bare back, with loose ties hanging down

When what to my wondering eyes did appear

But a tinsel-clad ambulance with lights blue and clear

With a little old doctor so lively and quick

I thought for a moment he must be St Nick,

But with a voice full of cheer he did loudly proclaim

‘Santa’s old hat.    St NHS is my name!’

Then with garb crisp and bright as the new fallen snow

His troops from the sky he did call to come low

‘Now Doctors! Now nurses! Now healthcare assistants!

Come cleaners. Come caterers.  Give your commitment!

To the ward! To the ward! Give it your all!’

And with that,  they all flew right through the wall.

And then, in a twinkling, I heard by the stair

A clumping of boots; St NHS was there.

He was dressed all in white from his head to his foot

With a stethoscope hanging down from his hood

A bundle of pills he had flung on his back

A thousand new treatments peeping out of his sack

His eyes – how they twinkled! His dimples how merry

A hundred clear drip tubes tied round his belly

A glistening syringe he held tight in his hand

To pump us with painkillers if we’d so demand

He spoke not a word but went straight to the job

His troops filled the ward, armed with pillow and swab

They tended, they cleaned, the doctors knew all our names

The toast on the trolley was warm when it came

Three pillows appeared at each of our heads

A duvet was laid with care on the bed

In a flash waiting lists were a thing of the past

And the dirt in the washroom was cleaned up at last

Even the ward nutters stopped shouting their ills

And for once everyone in there got the right pills

We all had our own nurse, firm but kind as can be

The TVs were working, the car park was free.

And then with a nod, and a burst of hand gel

He was off with naught but a short farewell

His blue lights flashing and tinsel glistening

Patients asleep, just me still listening

And I heard him exclaim ‘ere he drove out of sight

“Happy Christmas to all, and to all a good night”

 

 

With a little help from Clement Clarke Moore (1779-1863)

 

 

 

 

 

 

 

 

 

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.

Dr Who (or the Physician Associate)

One of the things I’ve always found confusing in hospital is trying to work out who’s who. Is the person taking my blood pressure a nurse? If he or she is the same person who makes my bed, then possibly not. Is the person making decisions on my care a consultant with many years experience or a registrar who has only just stopped being a student, possibly more knowledgeable about Minecraft than medication?

Well now the government plans to confuse us patients even more with what they are calling ‘ a new class of medic’.  The Physician Associate.  A sort of Doctor’s Assistant if you like,  with fewer time travelling duties than Sarah Jane ,Rose or Clara, but with the responsibility of examining us, deciding on our treatment and admitting and discharging us from hospital.  Sitting somewhere in the hierarchy between nurses and doctors, the Physician Associate will be a science graduate with two years intensive training. They won’t be able to prescribe drugs.

Inevitably my initial reaction to this, along with most of the other patient groups, is one akin to Clara when she sees her doctor change from a youthful Matt Smith to a grizzly Peter Capaldi.  I want a real doctor please.  With seven years training, a stethoscope and notches in his or her belt of complicated cases.  And while you’re on my case, NHS, can I also have a proper nurse to take my blood pressure, an eagle-eyed cleaner with obsessive qualities, and a Michelin starred chef to make my toast?

Ah. My Utopian NHS. We all know the NHS hasn’t got enough money and unless we fancy paying a load more taxes, that isn’t going to change. It doesn’t mean we shouldn’t all be entitled to see a doctor when we need to of course. Mark Porter, chairman of the British Medical council,  is right when he says these posts cannot replace doctors. They can ease the burden though, so that when we do need to see one, they are able to give us their full attention for more than a couple of minutes.

But it is absolutely vital that we patients are completely clear about exactly WHO is standing at the end of our bed, something which is a tad hit and miss at present. Then, if we’re not happy with the level of experience of our Physician Associate,  we can ask to see a real doctor.

So NHS, here’s what I propose. For a start make everyone wear a name badge with their rank on it. No, I mean really make them. It seems to me it’s a rule followed by some nurses and healthcare workers but not all, and virtually no doctors. Make it a disciplinary issue if they don’t. Us patients need to know who they are.
Then in every ward put up a notice explaining the different levels of experience that different staff have. That’s right – there’s plenty of space between the Clean your Hands posters and the leaflet telling us your survey showed everyone was happy with the food. And when you do it bear in mind barely anyone outside the Health service knows what a registrar or a house officer is. And don’t kid yourself in thinking that we can tell who someone is by what they wear. Thats a sort of NHS secret code that us patients generally can’t decipher. Frankly a white coat can mean the person is a doctor, a pharmacist, a dietician, a physio, a student nurse, an agency nurse or that science kid from Cloudy with a Chance of Meatballs. How are we supposed to know?

So by all means bring in your Doctor’s Assistant. The physician associate might be able to get on with some of the routine stuff leaving my doc to scratch her head over complicated issues. Just make sure I know who I’m dealing with. More Dr Know please. Less Dr Who.

 

Cost of NHS treatment (or Why you shouldn’t complain about the toast)

There’s a photo of a hospital bill from the U.S. doing the rounds on Twitter this morning.  With the comment ‘The cost of my c-section’,  it details charges like $10,353 for Room and Bed, $7,275 for nursery, $2,270 for pharmacy, $326 for blood storage and processing.   Total bill for giving birth $42,347.  40 thousand dollars.  About 23 thousand pounds.

One of the great virtues of the NHS is that patients don’t need to worry about the cost of their treatment.  But perhaps our complete lack of knowledge on the subject makes us somewhat ungrateful for the amazing service we have.   A junior doctor told me recently he had to wait until the consultant came on the ward before he could write the prescription for a treatment I was having.  I naively thought it was to do with the fact it’s a fairly serious drug ..but no. It was of course the cost that he wasn’t allowed to authorise.  He left my bed and (having nothing better to do) I began to work out just what this particular bout of illness was costing the NHS.

About 3 weeks in intensive care.  At £1500 a day roughly.  About £31,000.  Then another six weeks on a normal ward at £250-£300 a day.  At least another £10,000.  That’s before I start having any investigations or treatment.  Plasma exchange – about 10 or so of them.  No idea what they cost ( and Google isn’t helping me)  but the nurse reckons it’s a few thousand each time, so even being conservative, that’s probably another £20,000 on the bill. Several courses of a pretty expensive drug ( Rituximab) – at least another £10,000.  I’m up to about £70,000 pounds before I even start on blood tests and transfusions, pills and ambulances.  It certainly makes me less inclined to complain about the food.

I wonder though whether the NHS should make more of this.  Maybe we should all be given a fake bill when we leave.  Here’s what it would have cost you.  So instead of us complaining when someone comes to take yet more blood from our arms, we’re grateful  a decision has been made to spend a bit more money on our care.

One of the nurses giving me a plasma exchange was from India. Quite rightly she pointed out  to me that if I lived there, plasma exchange  just wouldn’t be an option, because I simply wouldn’t have the money to pay for it.    And the same is true in so many other parts of the world.  It doesn’t mean we shouldn’t complain when things go wrong in the NHS. And we are of course paying for it in our taxes.  But thinking about the cost of NHS treatment might make us a little more understanding about there not being enough nurses on the ward, why the hospital charges us to park and why the toast is cold by the time it arrives at our bed.

 

What would you pay to see a GP

In my experience, visitors to GP surgeries fall in one of two patient camps.  The first bunch, a small minority, are those who are often cited in articles about NHS lack of funding.  They’re the ones who run to their GP with their cold, their cut finger, or occasional tummy ache, taking much more of NHS times and resources than they actually need.     (I actually think these are such a small minority of the population that they’re almost mythical – GPs please feel free to disagree.)  The rest of us sit doggedly in what I would call the ‘Oh it’s probably nothing’ camp, otherwise known as the ‘I’m sure it will go away ‘camp, the ‘I don’t want to bother the doctor with it’ camp or the ‘I meant to get round to making an appointment but I just haven’t had time’ camp.

If we add a few more of us saying ‘I don’t want to pay a tenner to be told there’s nothing wrong with me’, then many of us will never quite get into our GP waiting room at all.  And yet that is an idea which is currently doing the NHS rounds.  First proposed (and rejected) at the British Medical Association conference last month, it’s being raised this week at the Royal College of Nurses conference.  No doubt it’ll be soundly rejected again, as nurses staunchly uphold the principle of free NHS treatment.   The arguments against it will cite discrimination against the poor, crowded Accident and Emergency departments, more red tape – all probably good reasons to reject the idea.

But there’s another basic flaw.  Just like Michael Gove’s policy on family holidays in term time, this idea will not target those it’s aimed at.  The patients with a mild cold will think it’s well worth a tenner and pay to see a GP in the same way that the truants still miss school.  But it will give those who probably really do need to see their doctor, another reason not to go.  Even for those of those think nothing of spending 4 quid on a latte, ten pounds is a lot of money which frankly we think we could use for other things, whether that’s a good decision or not.

Sit in any GP waiting room nowadays and you will find yourself surrounded by posters encouraging you to spend more time at the doctors not less.  Feel bloated?  It could be ovarian cancer – get it checked out.  Feeling thirsty all the time? It could be diabetes – go see your GP.   The fact that the NHS and various charities spend so much money on these campaigns suggests to me that far from us being a country full of whinging hypochondriacs who bother their GP with the slightest ailments, we’re actually much more likely to ignore potentially dangerous symptoms.

In November last year, I had what I thought was a bad cold, got very breathless, realised I was quite poorly but never quite got round to getting a GP appointment.  I was up to my ears in work, Christmas shopping, school concerts and just didn’t fit it in.  I coughed through the festive season, but then on 4th January was blue-lighted into hospital after collapsing with double pneumonia.  That’s my own stupid fault.     Of course I probably would have ended up in hospital anyway, but the experience did make me realise that I am one of those who will only get round to making an appointment when I really, really need one.   And I probably should make them more often, not less.  Charging me a tenner for the privilege won’t encourage me to do that, though it might make me sit there for longer with my GP and make sure I get my money’s worth.    For those who are really counting their pennies though and face a choice of going to the GP or paying for the school trip, this isn’t just a daft idea but a dangerous one.    Let’s stop talking about it.