GPs ‘failing cancer patients’

From the Guardian, and also making it’s way forth into the Daily Mail, the Mirror, Management in Practice, and  Pulse , amongst others.

The story is apparently that

“GPs are failing to identify conditions such as osteoporosis, heart disease and bowel trouble that can affect patients’ lives for years after they have become free of tumours, claims one of the UK’s leading cancer experts.

“The problem is so common that as many as 250,000 people who have survived cancer have had symptoms of such illnesses not picked up by their GP, Professor Jane Maher, the medical director of Macmillan Cancer Support, told the Guardian.

GPs’ lack of knowledge about cancer, and poor communication between hospital specialists and family doctors, meant signs of cancer treatment side-effects went undetected and caused patients pain, misery and discomfort, said Maher.”

I was disquieted by this. I am  GP.  Long term consequences of cancer treatments are well known and, in a strange way, a success story – people are now expected to live for decades after many cancers. Side effects have more time to become apparent. What was the evidence for her concerns?

I emailed Macmillan Cancer Support, who Maher was speaking on behalf of, late on Sunday 25th September. I had no reply by midday on the 26th, and phoned them, when I was told that my email was being dealt with. After another couple of emails I was sent this:

“If you look at the document (survivorship vision document) you will see that the statistic comes from J Armes et al paper entitled “Patients supportive care needs beyond the end of treatment: a prospective and longitudinal survey”, Journal of clinical oncology 27: 6172-6179 2009.”

This paper though, doesn’t actually back up the claims made in the Guardian piece. It’s conclusion is that

“Most patients do not express unmet needs for supportive care after treatment. Thirty percent reported more than five moderate or severe unmet needs at both assessments. Unmet needs were predicted by hormone treatment, negative mood, and experiencing a significant event. Our results suggest that there is a proportion of survivors with unmet needs who might benefit from the targeted application of psychosocial resources”.

So most patients, after a cancer diagnosis, don’t have any unfulfilled healthcare needs. Some patients after cancer diagnoses do, which are mainly psychological needs; and these needs were recorded 6 months after diagnosis, when patients would normally have been under the care of an oncology team.

After some tweets involving @MikeHobday of Macmillan,  @EvidenceMatters and @Dr_Aust_PhD, the press office at Macmillan arranged for Professor Jane Maher to phone me.

She told me that Macmillan have routine meetings with journalists including Denis Campbell of the Guardian. She said that his ‘angle’ at the start of their meeting was that GPs don’t care well for cancer patients. She said that she wanted to impress on him that she felt the problem was with record keeping and information sharing between oncologists and primary care, with oncologists not giving adequate information to GPs. I said that I didn’t see the evidence for the claims that were made on the Macmillan or National Cancer Survivorship Registry. She did say that there was evidence not yet in the public domain but in press which would support her argument.

Bottom line: I don’t think that cancer charities serve patients or doctors well when they use journalists to disseminate opinions about the quality, or not, of general practice care. If claims are going to be made based on ‘research’ within the public domain, then that research should be made freely and openly available. Cancer charities should also consider the adverse effects of their publicity, for example, GPs may become demoralised, or stop listening to future information Macmillan put out. This may also have impacts on the way patients interact with doctors, and this may be impacts for the worst.

9 Responses to “GPs ‘failing cancer patients’”

  1. Greg September 27, 2011 at 7:07 am #

    Thanks for digging a bit. You were disquieted. Well, this GP was disgusted and offended. I am very proud of the long term care my primary care team gives our population, including people diagnosed with a cancer. We have a very good two-way line of communication with oncologists, Macmillan and palliative care teams.

    I wonder why Denis Cambell’s ‘angle’ was that GPs don’t care well for cancer patients. Any hidden agendas?

    You are right of course. This feels like another pin stuck into the cushion of demoralisation.


  2. Greg September 27, 2011 at 7:51 am #

    (I must try and stop reading The Guardian)

  3. thejobbingdoctor September 27, 2011 at 9:40 am #

    Good work, Margaret.

    Let’s hope these “experts” will reflect on how easily their views are distorted by the media. Denis Campbell used to be a rock music reporter, and has had an undistinguished transfer to being a health correspondent for the Observer/Guardian paper. I am unsurprised that he comes to this issue with a fixed “line” – they always do.

    To the Professor – if you insist on dining with the devil, please use a long spoon.

  4. Gerry September 28, 2011 at 10:14 am #

    Thank you Margaret.

    I have responded to the Guardian – lazy journalism and poor responses from the experts – some of whom should know better.

  5. Margaret McCartney
    margaretmccartney September 28, 2011 at 8:23 pm #

    Nice letter Gerry – it’s here

    and NO retraction from Macmillan. That’s the last donation from me to them, then.

  6. Verite Reily Collins September 29, 2011 at 8:03 am #

    Sadly, as a cancer patient, I have to totally agree with what Prof. Maher says.
    But – would it be possible for patients such as myself to consult a register of GP practices with doctors who understand cancer? When I phoned my local surgery and asked which of their doctors had an interest in cancer, I was given an appointment with Dr. X.- who told me “I don’t know anything about cancer”.

    So as a patient, it is me that has to research all the problems I have had, and gently suggest ‘can you refer me to such-and-such, who deals with xxx?” I get no help at all – I have to find out whom and what can provide best after-care. And as a result of cancer drugs, my simple breast cancer, caught early on because I was vigilant, has turned into a nightmare five years with side effects including temporary blindness; bloody skin lesions all over my body; seven-hour heart operation; carpal tunnel syndrome; osteoporosis; – and some others.

    A sample appointment had me asking for referral to a specialist whom I had found; she had been trained in France, where I had had to go to discover that my skin lesions could be treated, and were due to side effects of Tamoxifen. Now my nails are breaking off leaving painful splits and blisters (side effect of another drug). The GP tried to refer me back to the specialist who had told me skin problems were caused by my age. Eventually I ended up shouting (something I have never done) to get him to refer me to the ‘new’ consultant who knows about cancer patients’ skin problems.
    I left that interview shaking all over – but I needed to see someone who undertands cancer side effects. But if you know how patients can access GPs who are interested in cancer care, please tell us.

  7. Margaret McCartney
    margaret mccartney September 29, 2011 at 12:36 pm #

    hello Verite
    ‘cancer’ is a massive field – many cancer specialists in turn specialise – so for example, one oncologist might only treat breast cancer, another might deal with endocrine cancers. If you add to that that side effects of cancer treatments might be uncommon, or difficult to manage, or unexpected, or uncertain – it becomes very difficult.
    I don’t think GPs woudl say they ‘specialise’ in cancer – it’s a hospital speciality, really, and requires different training, a different team, and different expertise. But I do think you will find many Gps who would be keen on looking after you ‘holistically’. Although palliative care to many people means ‘death care’, it doesn’t mean that and is major interest of many GPs and there is evidence that good palliative care after cancer diagnosis – not necessarily at ‘end of life’ – can extend life and quality of life. See here
    You might find asking for a GP with interest in palliative care will find you someone you trust and that you feel comfortable with. I am sorry that you have had a difficult time. best, mgt

  8. Mark Struthers September 30, 2011 at 6:58 am #

    Greg may be a good and conscientious doctor and he is certainly not alone … but sadly there are many lazy, greedy and dishonest GPs out there … who care nothing for cancer or caring for cancer patients. I know because I’ve worked with such people … as a GP too.

  9. David November 4, 2011 at 4:44 pm #

    My wife aged 62 who is never ill started to visit her surgery two years ago with a cough, pain across the chest, stomach pain, general tiredness. In the old days she would have seen the same GP each visit but now you never know who you will see. She suffered from continual infections (diagnosed at one point as having asthma) that never got better and a blood test a year ago for aneamia was never followed up. Infection in her sinuses resulted in an operation and it was only when the consultant became alarmed that she didnt recover well that he started his own investigations into her bloods. She was diagnosed with marginal zone llymphoma. I seriously blame the GP practise who I wrote to expressing my concerns about her fast deteriorating condition and who replied that if my wife was ill she should be encouraged to come and see them. Just what she had been doing.