Health Policy Today 26 September 2011: Responsibility for early diagnosis
Dr Tom Smith, associate director of Health Policy Insight, returns to the fray with this report on the first of the three events at the main party conferences, which asked delegates 'whose responsibility is it to ensure early diagnosis of health problems?'
Although delegates weren't allowed to vote on health resolutions at the Liberal Democrat conference last week there was plenty of associated debate in the halls, conference rooms and bars of Birmingham. Some of the best debate took place at fringe meetings organised at the Health Hotel.
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In my admittedly biased view, one of the liveliest of all took place at the fringe we at the British Society of Gastroenterology organised with Beating Bowel Cancer and Action on Hearing Loss.
Why do we have a problem with late diagnosis?
We invited delegates to consider why people with bowel cancer present at a late stage; why it takes people with hearing loss so long to present with problems, making cases difficult to effectively treat? We talked about the human and social costs of late diagnosis, a shortened or impaired life and more costly interventions. We wanted to know how to change this.
Whose responsibility is early diagnosis?
Stephen Lloyd chaired the meeting, MP for Eastbourne. On the panel was Baroness Jolly, co-chair of the Lib Dem policy committee on Health and Social Care, Anne Marie Hunter who was diagnosed with bowel cancer in 2006 and two clinicians, gastroenterologist Chris Hawkey and audiology expert Ruth Thomsen.
Stephen Lloyd explained that the fringe would explore whether doctors or patients are at fault when it comes to late diagnosis.
By way of introduction, he said that an estimated 4m people in the UK would benefit from hearing aids but are not using them. Long delays can mean that patients are often in their 70s before anything is offered. Some older people struggle to get used to them, not wear them and suffer as a result. He pointed out that 90 per cent of bowel cancer cases could be treated successfully if they were detected earlier.
Using Twitter to broaden debate
Reminding of us of the 'real' world, we had a Twitter feed displayed during the meeting with patients chipping in to our debate, with the hashtag #earlydiagnosis. The fringe partners had promoted the fringe to our supporters and encouraged them to tune in via Twitter.
One person who was not in the room responded to a Tweet from within the meeting,
'Stephen Lloyd asks whether it is patient or doctor that is responsible for early diagnosis'.
'I knew I wasn't well, i know my body. Dr wasn't having it. 2nd doctor though back pain. Took tears & begging 2 b taken seriously #earlydiagnosis'.
A key theme from Twitter - GP awareness and referral
A clear view on Twitter was that GPs are sometimes failing to recognise symptoms and refer people quickly enough.
'If I hadn't self diagnosed by research I wouldn't have persevered with my surgery & maybe I wouldn't have lived this long'
But other tweeters and those in the room noted individuals are slow to respond to symptoms and that GPs are under tremendous pressure to be see a vast array of patients with very different problems and have specialist skills of diagnosis.
Voting on responsibility
We gave credit card-sized keypads to those in the room so they could vote on the key question and to gauge whether their view shifted during the debate.
With so much technology in the room it was easy for things to go wrong and so before asking the main question we tested the keypad equipment with a warm up question. 'How long on average does it take people to report hearing loss problems?' We offered five options ranging from one year to 3, 5 and finally 10 years. Answers were evenly divided and a minority guessed the right answer, that it takes 10 years for people to take action over hearing loss.
After the warm-up and before the debate we offered the audience two responses to the question - 'whose responsibility is early diagnosis?' - the individual themselves or the NHS.
It is common to hear two reasons offered for late diagnosis, patients taking too long to present and GPs not referring patients with key symptoms. Whose behaviours do we need to change to improve early diagnosis? Should awareness campaigns be targeted at GPs or at patients? The answer to the question determines a certain philosophy that will influence policy.
On being presented the options one person asked/heckled, "what about being able to answer, both?" It is a very fair point. We considered amending the question but stuck to our original dichotomy - individual or NHS? We want to test people's instinct before exploring the large space between these two ends of the spectrum.
The keypads worked! And the first vote divided the room quite closely. 44% felt the individual was primarily responsible and 56% felt it should be the NHS reaching out to bring individuals forward.
Read on to see if those in the room changed their minds in the second vote.
Awareness of the problem is low amongst individuals and politicians
Stephen Lloyd MP admitted at the outset that he'd been surprised to read in his briefing notes that bowel cancer was the second biggest killer in the UK. If an MP with an interest in health doesn't know this then...
In discussion, Mark Flannagan the chief executive of Beating Bowel Cancer said that the NHS reforms would give a greater responsibility to local authorities for public health and raising awareness of key problems. A delegate revealed he was the chair of a local Health & Well-Being Board and asked what he should be doing and the questions he should be asking. He was urged to develop a link with public health institutions and understand the local burden of health problems.
A lot of people do not want to talk about bottoms. Many don't want to think about wearing hering aids. Are these vanity issues?
It may seem silly but discussion suggested it is incredibly important to realise that vanity issues play a large part in people not seeking help and are a barrier to individuals taking responsibility.
One tweet said,
'#earlydiagnosis bottom should not be a taboo word. Boob isn't?'
Baroness Jolly said her mother had resisted wearing a hearing aid while wearing glasses for many years. Why are glasses okay and hearing aids not?
An increasing focus on early diagnosis
Early next year, there will be a national campaign to promote awareness of bowel cancer symptoms. There have been two pilots so far: both resulted in a huge rise in attendance at GP surgeries, the vast majority of which were then referred on for specialist endoscopy. There is an issue about how endoscopy departments will cope - but aside from that, what will happen after the awareness campaign and can the surge in interest be maintained without afterwards without the targeted campaign?
Discussion suggested that the campaigns can help sustain the momentum if they can encourage familiies to share medical history. A common point in the fringe discussion was that people should be more aware of their family history. More than one person said that after having been diagnosed with a problem they found that others in their family had experience the same or related problems previously. It would have been useful to have known and we should encourage people to know more/share more about family medical history.
The campaigns will also be useful if they raise awareness of symptoms amongst GPs. While the public eye is on bowel cancer, then GPs may be more likely to refer and they are more likely to have their referral accepted. WIth increasing scrutiny of referrals ordinarily likely in the future, GPs may worry about the possibility of referring patients needlessly and the associated cost of an unnecessary procedure.
Gastroenterologist Chris Hawkey argued that the responsibility for serious illlnesses should be on the NHS and that the health system should help individuals become self aware and come forward with symptoms. But he placed greater emphasis on screening programmes claiming they would have more impact that would urging individuals to be vigilant.
Positive experience of screening
Several people at the fringe reported positive experiences of screening, related to prostate, breast and bowel cancer. There is a need for these positive experiences to be spent more widely in order to encourage a higher uptake of screening.
Baroness Jolley had recently taken part in a national bowel cancer screening programme and said she was impressed with the process - her results had come back within two weeks. Because of her experience, she looked into participation rates in screening, and noted that more women take part than men.
Participation rates for screening could be improved but there does seem to be a particular challenge in convincing men to take part.
As chair, Stephen Lloyd was very open about his own experience. His instinct is that men avoid thinking about their health and bases this on experience of his own behaviour. He admitted it had only been because his wife "twisted my arm up my back" that he attended screening for prostate cancer. The MP for Eastbourne doesn't think he is too different to other men in not being proactive about his health, which raises a question about whether public health campaign messages should seek to speak to specific groups.
Another key theme from Twitter was that people contract diseases at a younger age than the norm. Some patients stated that their GPs believe them to be too young for their symptoms to be an indication of bowel cancer, for example.
'#earlydiagnosis not happening for young people - took 3 GPs & several weeks to convice me at 36 terminal @ 39'
'My bowel cancer diagnosis could have been months earlier if Dr hadn't been so keen to blame stress/IBS/alcohol as I was 27 #earlydiagnosis'.
Patients feel that GPs sometimes believe individuals are too young for their symptoms to be cancer. Perhaps they feel the same about hearing loss.
Should the screening age be lowered?
If screening is a success should be it expanded? While there is a lot of support for screening there are some who point to the high cost that would be spent on this and therefore not on other things. But it was difficult to convince patients who had developed cancer before the screening age that it would be too costly, what about the cost of treating cancer that could have been arrested earlier in it's development.
One tweeter said,
'I was diagnosed with bowel cancer at beginning of August at age 51. Despite family history, I was never offered screening #earlydiagnosis'
Across the UK, there are different starting ages for the bowel cancer screening. In England we start at 60; in Scotland 55
Baroness Jolly worried that widening screening would cost a lot of money. There wasn't much sympathy for this view on Twitter. For example, one person in the room tweeted:
'Baroness Jolly talks about the costs involved in lowering the screening age #earlydiagnosis<<<< what are the costs in NOT lowering it'
Another not in the room wrote,
''It will cost more to wait than lower screen age. It cost Kirsty's life leaving 2 children. She was 36. Shocking'.
'#earlydiagnosis costs to diagnose me initially cheap'.
Back to the keypads: the vote on who people think is responsible for early diagnosis
We asked the people in the room to reach for their keypads and vote a second time on the question, 'who is responsible for early diagnosis?' The results showed quite a change.
29% of people now thought individuals should be responsible for being diagnosed early and 71% thought the NHS primarily responsible. This contrasted with 44% versus 56% in the initial vote. 15% changed their mind. There were just over 50 in the room, and it means that seven or eight people changed their mind.
Should there be direct access?
Our fringe debate moved onto asking whether patients should in some circumstances have direct access to specialists rather than rely on a referral from a GP. This inevitably raises a question of whether the proposal is founded on a lack of confidence in GPs. It is not. It is about exploring problems and how we can overcome them.
We heard several people say they had problems with getting a diagnosis. Patients in the room and on Twitter said they researched the symptoms, and then went through a process of convincing their GP.
On a personal note, I worried in advance of the discussion that opening up a debate about responsibility for early diagnosis would lead to people being overly critical of GPs. There is something going wrong with the system we have - and GPs are part of the solution to this, not the problem.
Chris Hawkey questioned whether it was reasonable to expect a GP to be able to cover everything, and said there was a need to have a greater sub specialty focus in managing care. He questioned whether the rigid division between primary and secondary care was a barrier to early diagnosis.
Audiologist Ruth Thomsen said that in parts of the UK the 'gatekeeper' role of GPs has already been removed and self-referral is possible. The implication is that this should be expanded.
It was clear that the conversation had moved into challenging territory: how much self-referral should be allowed?
We didn’t ask delegates to vote on this question directly at the Liberal Democrat conference but we will be both the Labour and Conservative conferences where we will have a little more time to ask a second question - 'are there circumstances when patients should be allowed direct access to specialist advice without GP referral?'
Throughout the party conferences we will be venturing further into this complex debate.
How effective are patients at self-diagnosis?
If self-referral is to happen and be effective, we will need to have greater confidence in patients ability to self-diagnose. While there are fears that in raising awareness of symptoms we will alarm people and overload services, experience suggests this need not happen if we can clearly explain symptoms and help GPs better respond to their presentation.
Patients say they because they couldn't make progress with clinicians they talked to, they looked into the symptoms themselves - and then convinced their GP.
'#earlydiagnosis I didn't know the symptoms I had were likely to be cancer - until I googled them. Why? It's the 2nd biggest killer. AWARENESS'
But not all people are the same - and some people don't seek help even if they are worried themselves. One tweeter said,
'My mum has suffered from hearing loss over 5 yrs, only now gone to Gp but GP could have proactively diagnosed early surely? #earlydiagnosis'
Audiologist Ruth Thomsen said that a lot of people were reluctant to recognise symptoms and needed help. Her experience is that many patients present late because they begin with denial, and take time to come to accept their hearing problem.
The view in the room was that we cannot make individuals responsible for their own health unless they are encouraged to respond to symptoms and check them out.
There is more potential for individuals checking symptoms, at least in relation to bowel cancer and hearing loss.
Baroness Jolly had checked out the Action on Hearing Loss website before the fringe and said there was an excellent test for people to check their hearing. There is also a website that asks people who are concerned to answer three or four questions in order to determine whether they should seek specialist advice.
Perhaps more people should be encouraged to test themselves. While there is a worry that awareness campaigns will alarm people and bring people to surgeries who do not need to be seen and are preventing others accessing services self-tests that screen peoples' symptoms might help.
I will be back to report the discussion around whether patients should have direct access. There are lots of associated complex issues such as the possible introduction of private providers to provide testing, about how the NHS will NHS will respond to the possible increase of self-testing.
A series of debates at the party conferences
We will be running the fringe meetings at the Labour and Conservative conferences using the same hashtag, #earlydiagnosis. Look out for the discussions on Monday 26th at 12.30pm (Labour) and at the same time on Tuesday 4th October (Conservatives). We will be asking whose responsibility is early diagnosis, and whether there are circumstances in which direct access should be allowed.
It will be interesting to see whether Labour and Conservative delegates vote along predictable lines; Labour believing the NHS should bear the responsibility and the Conservatives, the individual.
After all three events, we will be writing a short report outlining some key issues around the challenge of achieving early diagnosis - and will contrast the debates at the three conferences.
At the Labour conference we will be chaired by Jackie Ashley, the Guardian journalist, and at the Conservatives by MP and GP, Sarah Woolaston. She will no doubt provide more of a challenge to the voices that are critical of GPs.