Sunday 19 June 2011

The NHS WAS reforming for patients. That is now under Threat.

Look, this is a Sunday read. A make-a-cuppa-Sunday-supplement-stylee... (OK, look, it's long. But please don't be put off :)  

"Saving the NHS" has to be more than just words and at the end, there's an easy way to get involved. Let's just take politics out of this and offer achievable solutions to the people who have to run our hospitals and who are being forced to do a pretty awful job at the moment.

A while ago, I wrote this :  
"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, chemo-style drugs, they would arrange things, 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 in IBD now saves the NHS millions, up and down the country. They ran the studies that helped to 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. The department discovered some of 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?

Addenbrookes is a specialist centre for bowel disease. 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.  (I travel 280 mile round trips myself to be treated there.) 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 efficiency savings need to actually be efficient! 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, worsening their conditions.

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

So How am I today?

Bloody mystified."

Well today, after some careful investigations (NHS staff are rightly, fiercely loyal to their colleagues and trusts) I can explain what's going on. I think it's vital to remember that this will be going on up and down the country as the NHS tries to find "efficiency savings" never attempted before. Vital cancer services and emergency surgeries must be maintained. Wards must be run - at least on a skeleton staff - babies must be delivered and deaths must be dignified. Everything else must be up for discussion. We, as patients and the public need to be aware of this. 

Helplines do not immediately spring to mind as vital services. A Trust forced into finding cuts of up to 37% has to make heartbreaking decisions. We need to be aware of that too. The public seem to oppose the reforms of the NHS but this has obscured much of the  debate over the eye-watering level of the cuts services will inevitably have to face. If we accept these "efficiency savings," then maternity units and hospitals and clinics will close. Wards will be understaffed and patient care will suffer - it already is. 

The pressure on the NHS will be inconceivable - as Consultants and GPs are warning on a daily basis. The NHS faces a crisis and the government want to break up its entire structure in he middle of this crisis. That's one of the main reasons NHS staff oppose these changes so strongly. 

But in the carnage of panic-cuts imposed so quickly it's impossible to make rational decisions. what should the NHS do? Well many are trying to focus on reducing the need for clinic time, reducing admissions, and reducing costly or avoidable surgeries 

Chronic illness is one of the biggest costs to the NHS. We take expensive drugs, often for life. We need multiple admissions and surgeries. We must have regular diagnostic procedures and exploratory surgery. We use much of the physio or community services. We require the specialist mental health teams and hospitals. 

By making our care more streamlined, more integrated and easier to access (just as the nurses at Addenbrookes do) it saves the NHS millions every day. Need an ambulance at 3am? Call the bowel team as well - the special number will get you directly through to the on call registrar who'll get you seen quicker by the exact specialist you need. Need TPN? The bowel nurses will arrange it, saving the NHS a six week admission - minimum. This method of care trusts and empowers the patient to make the right decisions for their care too. 

Need to see the consultant every month? No, the bowel nurses can usually help you, meaning the consultant can take on thousands of patients rather than hundreds. Need to see the consultant quick, bumping someone else off the list? No, the bowel nurse holds a clinic and seeing her is just as good - often better - than seeing the consultant. 

Far from starving this vital service, the PCT responsible for Cambridge should extend it. The helpline has been struggling on with a 1000% increase in users over 15 years but has never been properly included as separate spending, just a part of the overall gastroenterology budget. Today, just 1.5 Consultant Nurses can be paid for and the service has finally and spectacularly crashed. They simply can't run it alone any more in any meaningful way. 

So here's my urgent proposal to NHS trusts up and down the country : If you don't do so already, set up services like this in your specialist departments and double their funding to give them twice the staff. Do it now, as soon as you possibly can. 

Empower and trust your patients, just as they do at Addenbrookes, to be in charge of their care in as full a way as they feel able. When a patient with a chronic condition has a good support team they trust, the rate of contact often drops. Just knowing they're there is often enough. Patients get better at managing their conditions and better access to specialist care. We often know more about our conditions than many medical professionals anyway, so this simple act of empowerment and support raises the standard of chronic care enormously. 

These are Consultant Nurses and it's time we recognised this vital layer of NHS care as amongst the most specialist and cost effective there is. 

If you do this, you will not only improve chronic care overnight, reducing the enormous burden it places on the NHS, but you will reduce the need for clinic time enormously, reduce acute admissions, reduce long term "crisis management" stays, reduce admissions for TNF-Alpha treatments and reduce the need for the repeated surgeries that are so costly both to he NHS and the lives of patients. 


If you think patients can have a say in the future of our NHS too, then perhaps you will send this article to NHS Cambridgeshire and maybe the Chief Exec  asking that they think about running the service properly, with 4 fully trained Consultant Nurses. 

I ask just that they follow the project closely and send someone to monitor the savings these nurses make all day, every day. For a month, just cost out all the admissions they avoided and the care plans they modified and improved, and the clinic appointments they saved. 

Then roll it out to every specialist department across the country. 

You might also want to send this to your PCT or Hospital Trust and that's fine too. 

This could ease a tremendous burden on the NHS at just the right time. It's relatively cheap and largely self run and managed. 

A final plea to those who have to decide where the money is spent : Do something sensible for long-term patients. Up and down the country, it will find you billions of those "efficiency savings" you need to find and improve long term care for fluctuating conditions. 

Last but not least, if you think this could help the NHS, do use the Twitter and Facebook buttons below to share this article, Thanks.


  1. Co-author of the atlas, Dr Bethan Thomas, also from the University's Department of Geography, added: "Despite many people's fears of a bankrupt – or broken – Britain, this remains one of the richest countries on earth, but the rich have not taken their fair share of austerity."
    Bankrupt Britain: An atlas of social change by Daniel Dorling and Bethan Thomas is published by The Policy Press on 23 May 2011 price £29.99 (ISBN 978184742 747 2)

  2. Good post Sue, i rely on my nurses when i am having a bad time, What is happening now is shared care and i have found that they keep batting it from one another Frustrating.

    On another note Mr C has said we should stigmatise stay away dads, he just keeps alienating people all the time dont he, without knowing the full history

  3. Hi Sue ~ I am so sorry to read this. What a short sighted and ridiculous decision. I wonder rather than simply being the result of crude cuts, is this linked into the Cambs Pathfinder initiative?

    Given the Future Forum response last week highlighted the need for integration ...also specifically citing Cambs as being 'the one to watch', it does not bode at all well for the reforms anywhere.

    On a purely financial basis I hope someone wakes up and realises that this will cost them rather than save money. On a patient care basis, I hope they soon realise that this before too many people suffer more than is needed.

  4. The problem with the NHS in particular (and all public services in general) is that when cuts need to be made it is the most vulnerable that suffer. When the Heath government added the admin layer to the NHS in the 70's to let medical staff concentrate on patient care it was heralded as *saving* the NHS from drowning in paperwork. Instead of cutting vital services they should dismantle administration and cut the salaries of non-medical CEOs

  5. Hello!

    I am a freelance journalist, currently working on a feature on how the NHS bill might influence people with disabilities. I stumbled over your blog while doing my research and was wondering if you would be available for a short interview? I would really like to hear your thoughts. Just drop me an email at if you're interested, and I'll get back to you!

    Looking forward to hearing from you!

    Thanks a lot!

    Sarah Leo