Wednesday, 15 August 2012

Girl with Acromegaly Sues NHS

A story broke some time ago about a young lady with acromegaly who sued the NHS, and won. I've been meaning to write about her for a while but I wanted to take the time to create an interesting and informative post contrasting her case with that of Kane Gorny. Alas, I have not had the time, so you'll just have to deal with a dull and uninformative post instead. Hurrah!

The story is this: Kate Woodward, an aspiring actress, developed acromegaly (i.e. a pituitary tumour secreting growth hormone, which lead to uncontrolled growth of her body) as a child, which went untreated between 2001 and 2005 as medics failed to spot the condition. She attained a final height of 6'5" aged 20, and sued the NHS for £2 million. She was awarded compensation of £1.3m.

Incidentally, the award for "least sensitive headline about this story" goes to Healthcare Today UK, which went with "Freak Growth Woman Sues NHS".*


Her case for being awarded this level of compensation was that, as a result of her condition being untreated for so long:

- Her height and "ugliness" meant that she could no longer go into a career as an actress.
- She has psychological difficulties and feels like a "freak" because of her condition.
- She has significant problems with her bones, knees and teeth, and cannot buy normal-sized clothes.
- The condition affected her childhood, schooling and friendships.

And, most significantly:

- She wishes to receive all future treatment in the private sector.

Now, not long after this story was first brought to my attention (by a colleague, thank you!) I noticed that it had also popped up as a topic of discussion on the Pituitary Foundation's forum. For those of you who don't subscribe, one member created a poll entited something like "Should Kate Woodward be ashamed of herself?" The results of the poll were overwhelmingly that she should (although in fairness by "overwhelmingly", I mean "there were four votes in total").

Why the anger? Surely she has a fairly good case, right? Undoubtedly, when a doctor is presented with a girl who measured 5'9" at just eleven years old and keeps growing, you'd hope that it wouldn't take four years to just Google it and think "hmm, maybe we should rule out acromegaly". Although we can't know that faster treatment would have effected a cure, it might have controlled or reduced the symptoms. She will have to live with injections and monitoring and joint problems and feeling self-conscious for her whole life.


The problem is that this is not, actually, an unusual case - at least, not within the magical world of pituitary tumours. If every person with acromegaly decided to sue the NHS for delayed diagnosis, it would be one hell of a bonus day for lawyers. If you threw in people with other often-missed pituitary conditions like Cushing's Disease and TSHoma, it would probably result in a sudden UK lawyer shortage as they all retired to small Caribbean islands. If you based the level of compensation awarded on the number of years the condition went undiagnosed, the small Caribbean islands would probably reinvent themselves as world financial hubs.

I exagerate. But the mean length of time from onset of symptoms to diagnosis of acromegaly is, according to this MedScape article, around 12 years. Even if that estimate is too high, the point is that pituitary tumour conditions can be hard to diagnose, and they are often missed because they're rare enough that doctors don't see them often, and often don't expect to see them either. Four years to diagnose a patient with acromegaly is, sadly, not uncommon. I first showed symptoms of my TSH-secreting pituitary tumour aged 17, and I didn't get a diagnosis until I was 22. (In case you're bad at maths, that's five years). Even after my superfast heartrate made it clear that Something Was Wrong, it took a year to work out what that something was.

So if there's a slight lack of sympathy from other acromegalomaniacs,** it could be because they're thinking "Damn, £2m! Wish I'd thought of that."

 But I doubt it.  And I'm not just saying that because they're bigger than me.***

Now I want to note right off the bat that where there is evidence of medical negligence or it takes a long time to get a diagnosis, you should complain. Vociferously. You should complain in the hope that procedures can be improved. Otherwise there's nothing to stop future patients from suffering through the same tortuous process to find out what's wrong with them. But there's a difference between seeing a problem, taking a complaint as far as necessary to fix that problem for future patients, and just suing to get as much as you can out of them. Through the normal complaints process, the hospital in question offered Miss Woodward compensation of £700k, no court appearance required. If she lives to the age of 90, that would be £10,000 medical expenses covered every year. Additionally, according to the Daily Mail, which I personally take with a pinch of salt and under the supervision of a doctor, the hospital trust had already spent £288,000 on Miss Woodward for "treatment, dental care, holidays and special footwear".

Even the £500k difference between what she was offered and what the court awarded is a big chunk of money. £500k that could have gone towards treating other patients. I need somatostatin analogue injections (probably much like those Miss Woodward takes), and if you've been reading this blog lately, you'll know that it is proving slightly tricky to persuade someone to fund them. £500k could pay for 666-and-a-bit doses of those injections. Which doesn't sound like that much, until you realise that each dose lasts for a month, so £500k worth of injections would last me for fifty-five years. And six months. Assuming I needed them continuously. And of course by that point I would be 79-and-a-half, so chances are I could be dead by then anyway.

 And here's the thing. If the NHS messes up and, as a result, you end up incurring further costs in your daily life (eg. you're a professional tap dancer going into hospital for an appendectomy, and you wake up with a leg missing) then yep, you should get compensation and if they won't agree to pay it, sue them with my blessing and encouragement. If the clinical negligence of your child at birth leads to brain damage which will affect that child for their entire life, then sue for the money needed to support them. And if/when the NHS messes up so badly that it becomes a danger to other patients, and you follow through that complaints process and nothing changes, sue them until they sit up and pay attention and mend their ways.

 But I am somewhat uncomfortable with suing the NHS for the loss of a career that did not yet exist, and for the costs of having exactly the same treatment as the NHS provides, but done privately. (I'm also intrigued by the concept, since she presumably did not have private health insurance before diagnosis and consequently insurers would be unlikely to cover her pre-existing condition?).  I've had an MRI scan done by a private provider and done by the NHS and the experience was almost exactly the same - except the private hospital was a lot harder to get to on public transport.

I guess in some way I think that when the NHS messes up, part of the compensation is the NHS. The very fact that you live in a country where you don't have to worry about the cost of healthcare means that when the NHS makes a mistake, it - not you - ends up bearing any increased costs of your care as a result of its mistake. Perhaps in some countries when a patient gets a hospital-acquired infection, their bill from the hospital is increased - but in the UK, if a hospital gives you an infection, it has to foot the bill to try and fix it.

But it also means that when you sue an NHS hospital in the UK, you're not taking lobster off the table of a fat cat investor (well... not yet... comments about Mr Lansley on a postcard, please). You are taking money away from that hospital. Any sensible hospital trust will have a big old stash of contingency fund to cover the cost of lawsuits, but I still confess I'm uncomfortable with the idea of suing the NHS for anything less than an ironclad reason, because that money could be put to better use. It could be used to help treat someone just like you.

I don't think Kate Woodward is a bad person, and I don't think she should be ashamed of herself. I simply don't have sufficient details to form an opinion on this case, and she may well be entirely justified. But she sparks off an interesting debate. That's my opinion. What's yours?

*I noticed Jon Danzig, a journalist with acromegaly, took them to task for this in the comments section of the article, good on him!

** I don't know what the collective noun for "a group of people with acromegaly" is, but it should really be this.

***Common misconception: people with acromegaly only become very tall if the condition develops during childhood/adolescence. If it develops in adulthood, it will lead to bone and soft tissue growth but usually won't increase height much, if at all.


  1. Thank you for your well-written and intelligently considered piece about Kate Woodward’s decision to sue the NHS for the delays in diagnosing her acromegaly gigantism. Unfortunately, many people misinterpreted Kate Woodward’s litigation because the media didn’t report her case properly.

    Kate’s increased height and thwarted ambition to be an actress were not the main problems for this young woman, although most readers might think otherwise from reading the reports. They probably thought, “What a frivolous case – suing the NHS simply for being too tall”. You only have to read the comments of Daily Mail readers to see that hardly any had sympathy for Kate.

    Yet, as you know, and probably most of your readers are only too aware, the condition Kate Woodward suffers from has many debilitating and life-shortening symptoms*. These include soft tissue and bone overgrowth, including dangerous enlargement of the heart and other internal organs; chronic exhaustion; dramatic weight increase (Kate is 24 stone); severe damage to joints; loss of fertility and libido; psychological and personality changes as a result of the massive overdose of growth hormone produced by the tumour of her pituitary. These are just a few of the long list of profound difficulties Kate faces – and no doubt increasingly faces in the years to come.

    Earlier diagnosis not only could have been achieved, but would almost certainly have resulted in a much better outcome for Kate and her future prospects and quality of life.

    Kate’s story brings into question whether doctors and hospitals should have a financial responsibility for late diagnoses, especially in cases of acromegaly, where the delay in diagnosis can be many years, mostly because the presenting symptoms are not recognised in a timely manner (even though some of the symptoms should be blindingly obvious, as in Kate’s case).

    Sadly, most patients with acromegaly are diagnosed late, often with devastating consequences that can and do ruin lives. Only in exceptionally rare circumstances will these patients receive any financial compensation for the missed opportunities at achieving an early diagnosis that could have resulted in a cure.

    But here’s a thought: If there were more high profile litigious cases such as that of Kate Woodward, maybe it would result in earlier diagnoses; because in many cases the late diagnosis is simply careless doctoring and this could wake up the medical profession to act with more urgency and diligence. All it would take to confirm or rule out acromegaly is a simple cheap blood test (IGF-1 - about £50) – surely much better value for the NHS than a million-pound law suit. An IGF-1 blood test should be routinely ordered at even the slightest suspicion of a pituitary disorder.

    Finally, your article mentions the rareness of acromegaly. In recent years I have been challenging that assumption. For sure, “acromegaly gigantism” (occurring during childhood) is extremely rare – but then, a child or teenager’s unusual height in comparison to her siblings or parents should surely prompt any competent doctor to order that simple blood test. Recent research, however, has indicated that “acromegaly” (occurring in adulthood) is not so rare; it’s simply rarely diagnosed.

    See: “Millions might unknowingly suffer from growth-hormone disorder”

    *I was banned from the Pituitary Foundation forum after I challenged one of their doctors who claimed that “acromegaly is relatively symptom-free”.

    1. Unfortunately, it seems that the only way to get the attention of physicians is the route that this young woman took. However, other than her physicians and those reading about her case, remain ignorant and don't even consider ruling out this horrible disease when similar patients present to them. It is not clear to me why she chose to have private treatment- maybe it's simply a matter of trust? In any event, I think I would have more sympathy/compassion if she would have donated the funds to an Acromegaly research group.

      Jon is thoughtful and sensitive in his response. It is difficult for me to focus solely on this person's quality of lfe, without considering the effect on the quantitative aspect, of others' consequences. Would others' care be downgraded as a result of the hospital losing funds?

    2. Anonymous wrote, “Would others' care to be downgraded as a result of the hospital losing funds?”

      This, I feel, is a dangerous approach for fellow patients to consider. Pituitary patients often need some of the most expensive medications bought by the NHS. Should they worry that the expenditure on them might devalue the care of others? That cannot be the burden of patients to consider; otherwise we will end up pitching patient against patient.

      In the case of Kate Woodward, the hospital admitted liability without any fight; there was negligence, serious negligence, and the hospital didn’t disagree. The only matter for the judge to consider, in the light of all the facts (which we don’t have), was the amount of suitable compensation.

      It’s a shocking statistic that in the UK, one in ten of every patient admitted to hospital suffers serious harm because of an avoidable error.* Where there is negligence, we need patients to speak up and to seek appropriate recompense. How else will outcomes improve?

      *Source: House of Commons Health Committee report on Patient Safety

  2. Great post! I'm the guy that added that poll on the pituitary foundation website. I was diagnosed with a pit tumour and acromegaly a few weeks earlier and my action was driven by anger. I'm 35 years old and awaiting surgery here in Manchester. I have a blog over at and i will definitely be keeping an eye on your blog as this piece was really well written and thought provoking. Have a great week and take care, Richard.

    1. Thanks! Awesome to hear from you and good luck with the surgery, I'll be sure to check out your blog :)

  3. I met Jon Danzig whilst he lived in Deland,Fl, USA (ca 1980) which is just about the time that I began suffering violent pain which my highly regarded physician diagnosed as due to a phlebitis and was treating with steroid injections.

    I became concerned about the long term effects of this palliative "treatment" and the increasing occurance of the episodes of blistering pain; and went to see a lowly podiatrist (who are not M.D.s in the USA). "You've got gout" says he. Me, eternally sceptical read up on gout! Damn a first year student could have diagnosed it. But the lab results were "borderline", my prestigious MD was treating the lab
    values and not me.

    At the time the average case of gout took 9 years to be accurately diagnosed. Jon's experiences and mine own led me into a career of medical agnosticism, I no longer regarded any physician as God. I always instruct my own clients adopt a "buyer beware" attitude toward
    their kindly physician. George von Hilsheimer, Ph.D., F.R.S.H.


  4. high all , my granddaughter is 8 yrs old and 5 ft tall,her shoe size is a UK 4 and developing breasts, the doctor says she is an early developer? she as recently complianed of head ach and tummy pains nothing wrong with her eyes or apendics. My research makes me think she is over producing growth hormones, i am a foot Practitioner (Chiropody)and studied about the Endocrine system, i think she may have a over active Pituitary gland, how do approach our GP ( DOCTOR) without being too informed about this condition?