Treasury intervention at Papworth prioritizes debt over saving lives‏

As a recent double-lung transplant patient I was shocked to read that Papworth hospital is under threat of closure from the Treasury.  As the UK’s largest cardiothoracic hospital, it is one of only seven hospitals in the UK that performs heart and/or lung transplants, and, with the exception of Harefield (where I had my surgery), has almost double the number of patients in after-care then its nearest rival.

Yet this hospital’s vital and successful role in the UK’s delivery of transplants, amongst other essential services, is now at risk. The Government is demanding yet another review about moving Papworth services in part or in entirety to Peterborough City hospital, to help bail out the latter from its crippling debts. This comes despite the fact Peterborough’s debts are entirely unconnected to Papworth, which is one of the NHS’s strongest financial performers.

Transplants are incredibly complex procedures that need highly experienced clinical teams and specialized equipment for the surgery, and before and after care. It isn’t an exaggeration to say that the excellence behind these established teams is keeping people alive for longer.

Katherine Graham, who received a heart and lung transplant at Papworth last September, said: “I have seen at first hand the amazing work and dedication of staff and have received first class care at all times.” This personal experience is reflected in the hospital’s Friends and Family test score of 85%, the highest in East Anglia.

Yet Graham believes that a move to Peterborough “would result in diluting our care and the expertise that has already been achieved at Papworth and would jeopardize our futures.”  She’s right to be concerned. In addition to being debt-laden, in its most recent Care Quality Commission (CQC)  inspection Peterborough hospital failed to meet two essential standards, including providing appropriate care for its patients.

Back in July 2010, when the Government published its white paper on its intended radical NHS reforms, the foreword, signed by Cameron, Clegg and then-health minister, Lansley, said:
“Patients will be at the heart of everything we do. So they will have more choice and control, helped by easy access to the information they need about the best GPs and hospitals. Patients will be in charge of making decisions about their care.”

Controversially patient choice was intended to create a market in healthcare in which hospitals with excellent standards of care would thrive as more patients chose to attend them, while those who gave poorer care would be left to close if they couldn’t attract more patients by improving their services, and therefore gaining increased funding.

There are huge problems with designing healthcare provisions on this model, not least the fact that the poorest or most ill patients have less capability to travel far for treatment, but the Treasury’s intervention over Papworth undermines the reforms’ positive focus on patient experience as it is perversely penalizing one hospital for being successful and rewarding the other for failure.

Yet it is evocative of the future direction the Government is taking with hospital restructuring. Still brooding after appeal court judges ruled it acted illegally in cutting A&E and maternity services at London’s Lewisham hospital, the Government is pushing a critical amendment to the Health care bill through parliament. It would allow administrators to force changes upon financially viable hospitals which neighbour failing hospitals, without the need to consult patients or doctors.

It is a fallacy to say that patients will have any real influence over NHS spending when services at their local or chosen hospitals can be closed without clinical justification, or, in many cases, when closure would actual harm outstanding care. The drive for improved health standards that patient choice was meant to champion cannot succeed if hospitals which provide excellent care are seconded to those that have the highest debts.

I am incredibly grateful to the NHS and the team at Harefield who helped give me back my life through a transplant. I would be devastated if my friends’ chances of getting the same life-changing opportunity at Papworth are jeopardised by this Government’s chaotic and unfair attitude to hospital reorganization which prioritizes reducing debt over saving lives.

There but for the grace of my donor go I.....

Today Emma Jane Kingston should be celebrating her 21st birthday but she died earlier this summer from Cystic Fibrosis (CF). She needed a lung transplant but, like a staggering one in three CF people on the lung transplant waiting list, she didn't get one in time.

One of the frustrating elements of my illness, Cystic Fibrosis (CF), is that due to cross-infection risks I can never mix with people who also have CF. So as my health worsened last year and I started considering trying for a lung transplant I sought out people on twitter in the same scenario as me. And that’s where I met the indomitable Emma Jane Kingston or, in the world of twitter, @betseybunny.

We were both being assessed for a transplant simultaneously and we met for the first time at Harefield hospital's outpatient department - we both had our first assessment day on January 16th 2013. But whereas I could barely talk about it –hiding the deterioration of my health away from the majority of my friends for most of the six-month assessment process - she tweeted about it to all and sundry. I’d send her private messages on twitter saying I wasn’t ready to talk about it publicly and she’d berate me asking how could I cope with the stress in secret.

I’d say to my husband in private, sounding like every one of my 32 years, that young people talk about their life too openly on the internet. But I’ll concede that perhaps I was the one in the wrong. Using the web, Emma opened people’s eyes to the pain that people with invisible illnesses can suffer. She made people rethink their perceptions about what it is to be seriously ill, as despite her deteriorating lung function, she was outgoing, made the most of life, kissed boys, went to festivals, dyed her hair seemingly every month and did I mention she was absolutely stunning?

But then when she died, and when other online friends of mine have died, how do you grieve? You can tell your friends but it somehow doesn’t seem as serious to them as Emma wasn’t a physical presence in my life, she never popped over for a cup of tea or glass of wine in the sunshine.

Her family will never know the hundreds of people in the UK and around the world that have mourned her death. She may have been only an online presence in my life, but her death has been felt deeply by all those that followed her blog, read her tweets, messaged her on Facebook. So on behalf of all the tweeters who mourned your loss: Emma, you were respected, you were admired, you were loved.

I finally received my double lung transplant on 30th August this year. When I think of Emma, I'm overwhelmed with the thought that there, but for the grace of my donor, go I . Emma spent her last few months trying to raise awareness of organ donation, so please consider signing the donor register: www.organdonation.nhs.uk

                                                            Emma Jane Kingston