Tuesday 17 May 2011

So, how am I?

For the last 15 years, my hospital has run a brilliant service for sufferers of bowel disease.

A team of two specialist nurses ran a helpline, offering over-the-phone advice to patients. Rather than going to see you GP, (who invariably knew little of your condition) waiting for a referral to see your consultant, waiting for the appointment to see your consultant and taking up valuable clinic time, you could just ring the super-brilliant nurses, talk through your query, maybe get a prescription or recommendation sent directly to your GP and save the NHS hundreds of thousands of pounds.

If you found yourself at death's door, dangerously in need of an admission, the bowel nurses, who got to know you well, would arrange things almost instantly and save vital hours or days waiting for the slow wheels of the NHS to grind into action.

If you needed strong, chem-style drugs, they would arrange things with NICE, contact the drug company, arrange for the drugs to be delivered to your home, train you in how to inject the medicine and oversee the monitoring with your GP. Blood tests could all be arranged to make sure the drug wasn't causing damage and sent immediately to the consultant. Treatments like these would otherwise require an in-patient stay every two weeks, costing the NHS.....hundreds of thousands.

This wasn't their only job. they were also both research nurses in one of the world's leading bowel disease centres at the hospital. Working with just three or four consultants, they made huge discoveries in their field, developing diet management that is widely used all over the world. Diet management saves the NHS millions. They ran the studies that discovered that ulcers could be treated with simple antibiotics. They have pioneered genetic research in bowel disease that has led to the treatments now being used as a gold standard throughout the world. They discovered the genes so far linked to bowel disease.

Today I rang up to hear this message:

"We're sorry to announce that due to circumstances beyond our control, we are no longer able to run this service. In the first instance, please contact your GP who will make a referral....We hope to be able to re-introduce this service in the future."

Can you even begin to imagine the chaos this will cause to my life and thousands like me? We are very much the "most vulnerable" of bowel disease sufferers. We are referred from all over the country - I very rarely meet anyone on a ward who is local. We have the most severe cases, the worst complications, need the most intricate and pioneering surgery and basically, we take bowel disease to a whole new level.

Addenbrookes also deals with the patients who have lost so much bowel, they will never eat or drink again. They are fed with Total Parenteral Nutrition, a liquid feed that is fed through a central IV line directly to the heart. (I've had it many times). The IV must be set up under sterile conditions and it takes 6 weeks of in-patient training to be ready to do the task yourself at home. Can you even begin to imagine the support these patients need from nurses like those on the end of that phone line? You are at constant risk from infection from bacteria with a direct entry to your heart. You need someone at the end of a phone!

And this is the best example of why NHS cuts cost money. Just look at how much this is going to cost. Think of all those extra admissions!! For thousands of things those 2 nurses dealt with on a daily basis!! The extra referrals and appointments, the extra stress and uncertainty that patients will suffer.

No more brilliant discoveries or time-consuming research that might lead to them.

So How am I today?

Bloody mystified.


  1. Gosh, that is bloody awful. That's all I can say!

  2. Like Jean-Mary I'm speechless, this seems so incredibly short sighted. Not just about the money, but for the patients who need the service. I'm really sorry to hear it.

  3. OK Sue - who is the consultant and are you going to have a word ? Ally or enemy, that has to be first port of call. Medics certainly won't be on the fence. It's their careers and empires we are talking about, too. Then take stock and decide who to go after next. I am a long time out of the NHS but I think I still know how this works, and what I don't yet know I can soon find out. And I still know one or two good people. Want to wind me up, point me in the right general direction and let me loose ?

  4. What did you used to do Chris?

  5. I ran hospitals for fifteen years. Ended up as Unit Administrator for Ealing Hospital General Wing and the Perivale Maternity Unit (Ealing had links to the Hammersmith). Didn't like how it was going under Thatcher. Left that to set up the Nurses Central Clearing House (UCCA for nurse training, now defunct). Then a year and a bit as Head of Communications for ILEA. Sounds more impressive than it was, but I gave them email. Then twenty three years in Kent Social Services. I think on this issue I may know what I am talking about, and what I don't know I learn fast. Also I know a few good people, my wife lots more. So if you really are inclined to let me loose, sit back and enjoy the show. But it is your life, your potential nightmare and definitely your call.

    Also, by way of background, first in the family and from the council estate in Upton Lea Slough to get to the grammar school let alone Wadham College Oxford. I am reasonably fluent in French and German, can manage in Russian and pretty good at Latin. Drop me anywhere in Western Europe bar Finland and Hungary and I can get by in the local lingo. And yes I am an arrogant SOB with an attitude, so you may not want me fighting your battles for you. But if you do, then the oppostion had better watch out, because when I put my mind to it I am good, very good. And I don't like to see decent people screwed by any bugger's system.

    Not at all manic today then. You may want to think about it. I am yours on this fight if you want me.

  6. That is terrible news sue and as each day that goes past things are getting worse :o :o :o
    Heaven knows where this will all end up probably in a blood bath somewhere in a local DWP centre
    Chris i do so hope you will be able to help sue out as she could do with some that's for sure

  7. Chris Morris sounds like a guy to have onside Sue.

    Deeply sorry to hear that these idiots in England are messing with vital services instead of saving money on chief executives' perks.

    Give them hell. It is so wrong.

  8. Awful news, Sue! I hope you (and perhaps Chris Morris, above) can get to the bottom of why the service has been closed and by when Addenbrooks hope to have it re-opened. I wonder, are other Specialist Nurse-led services also being closed? It seems extremely short-sighted to close units or services which save money and pressure on other departments. Not to mention their potential for saving lives :(


  9. If you haven't already this would be a very useful item to submit to http://ukpolicymatters.thelancet.com/?p=20

    "The Lancet UK Policy Matters publishes a growing body of evidence to illustrate the positive and negative impacts of policy changes on health.

    We are looking for a range of evidence from personal narratives and experiences to more detailed analyses of health data. Everyone is welcome to submit evidence to The Lancet UK Policy Matters including the public, patients and professionals.

    It is only by looking at evidence that we can be clear what impact policy changes have. We want to gather this evidence from the ground in real-time. The evidence we collect will provide early warning signs of policy impacts and is freely available to be used to generate hypotheses for more in-depth research."

  10. Yeah, you know what? Time to stop signing petitions no politician is going to read and actually get some direct action going. I hope Chris can get in on the case but if it's happening to you, Sue, in this particular department, I suspect it's happening everywhere with all sorts of conditions. It ain't cool. I don't think any political party has the guts to stop it unless they realise the repercussions of what will happen if they don't.

  11. It seems to me that the last phrase in the message may point to a temporary difficulty. I hope you and your new rottweiler get to the facts before going any further with this. Otherwise the fizzle will hurt the cause.

  12. You know me Howard - I'm always fair if nothing else.

    Chris - You sound like a wonderful ally. I have urged forward an appointment with my consultant to 7th June. I get on like a house on fire with him and have been his patient for over 15 years. He's a good guy and will tell me the truth.

    We have to make sure that it is not another funding stream that has collapsed - the dept do get research money.

    Let's see what they say then and take it from there.

  13. I imagine it will be a case of "non-essential service" which when deciding whether or not to maintain cancer services it is.

    I Should imagine services like this will be the first to go regardless of the value they provide.

  14. Sue

    ok, sounds like a plan. Expect to be away most of June, but will be online and there are telephones, so let me know if and when you need me.

    Howard - Rottweiler ? On balance I think I like that. Bit scary if it's not your dog. Cave Canem !

    best wishes

  15. Nothing to say really other than how horrified I am to read this post. Didn't want to just read and run. I really hope that this is just a temporary thing. But suspect you are correct that it's been one of the first things to go.

  16. This country is going to the dogs and no-one running it has any common sense! The pencil pushers just don't understand how invaluable services like that are as their not on the front line seeing all the good they do. Hope it gets sorted soon for your sake and others like you xxx

  17. Grr! More short-termism! We used to call this 'seagull management' at work -- they fly in, make a lot of noice about how important they are, change everything for reasons that suit their own short term goals, then fly off before the crap lands on everyone else.

  18. Seagull management *snicker* I just had a Nemo flashback.

    Mine! Mine Miiiiiiine mine mine mine! Sorry, I'm a parent *hangs head*

  19. First time commenting - I've been keeping up to date with disability bloggers for work (I'm working on a new disability mag), which is how I found you.

    Really really sorry to hear this, Sue. I have Crohn's too, although a much milder case whichis now under control. I know how valuable my local IBD clinic is, and cannot imagine what I'd do if I didn't have the staff on hand when I have a problem. Like you say, GPs don't understand the condition and that specialist help on the other end of the phone is a life saver.

    Really hope they sort this out. People don't realise how valuable clinics like these are to people with chronic and unpredictable conditions.

  20. Few, if any, Conservatives know the meaning of the term "false economy". Although, in all fairness, it was under Labour that people started warning of the dire shortage of physiotherapists, and that people would be permanently damaged if they couldn't access the right physiotherapy in time.