Health Policy Today 3rd October 2011: Labouring over late diagnosis

Health Policy Insight associate editor Dr Tom Smith continues his series from the party conferences, reporting on the debate from Labour on late diagnosis.

Would direct access to specialists result in earlier diagnosis of health problems and save money, or would it swamp the system and cost us a fortune? Would it weaken the ability of the NHS to manage patients in a co-ordinated fashion? These were the issues at the heart of a fringe debate at the Labour Party conference.

Last week, I wrote about debate at the Lib Dem conference and the first of three fringe meetings at the party conferences on the problem of late diagnosis being organised by the British Society of Gastroenterology, Beating Bowel Cancer and Action on Hearing Loss.

The second of these debates, at the Labour Party Conference, saw discussion move on to question whether there should be direct access to specialist care in some circumstances, cutting out the role of the GP and referral.

As with the Lib Dems, we were joined in the debate by people on Twitter.

The problem of late diagnosis
A simple fact about bowel cancer illustrates the seriousness of the problem we are debating.  Bowel cancer that is detected early is almost always cured; and bowel cancer that is diagnosed at a late state hardly ever is.

The Guardian’s Jackie Ashley, chaired the debate and opened by saying that both the problems of bowel cancer and hearing loss were close to her heart.  She is the daughter of Jack Ashley, who was MP for Stoke-on-Trent for 26 years and is now a Labour member of the House of Lords.  At the age of 45 he became profoundly deaf and the UK’s first totally deaf MP.

A friend and colleague of Jackie’s was diagnosed with bowel cancer at a late stage and died last year.  Her husband feels guilty that his wife might still be alive had he pushed the doctors harder.

Jackie Ashley feels the internet had helped empower patients who are now better able than in the past to research the symptoms and point themselves in the right direction within the health system.

Pete RN on Twitter said, 'I live on the Internet and feel guilty for not looking...nut I didn't know WHERE to look. We trust the GP to know'


Bowel cancer, GPs and referral
In our first debate at the Lib Dem Conference, the problem of GPs sometimes failing to recognise symptoms of bowel cancer was a key theme - and debate at the Labour fringe began along the same lines.

A patient explained that having researched his symptoms on the internet, he was sure he had bowel cancer but struggled to convince his GP this was the case. He took the view that his GP would be convinced by continuing symptoms. When these developed he went back to his surgery, saw a different GP and this time was referred.

Again on Twitter, Pete RN tweeted, 'HOW can a GP FAIL to know the symptoms of the 2nd biggest killer?'

Whose responsibility is early diagnosis?
Those attending the fringe meeting were asked at the outset to give their instinct on who they feel is responsible for early diagnosis, the individual or the NHS?  Voting with keypads, the audience were split 41% to 59% with the majority taking the view that the NHS is responsible for early diagnosis.


It’s the NHS
In debate, Professor Chris Hawkey from the BSG, said that he had voted for the National Health Service being mainly responsible and he cited the Bowel Cancer Screening Programme as a key reason.

The Screening Programme has picked up a lot of early cases and led to the removal of pre-cancerous polyps. Chris suggested that this systematic approach is preferable to relying on GPs capturing all symptoms in individuals presenting with problems.

Chris argued that the idea of putting all the responsibility on GPs is flawed and that the primary care / secondary care division needs to be abolished, with groups of clinicians working together on better triage across the system. There should,he said, be an organised division of labour between hospital specialists and GPs.  

An audience member tweeted, 'integration - same word emerging from different fringes but How? How? How?'

Politician, Debbie Abrahams, said she would have liked to have voted that early diagnosis should be the responsibility of both individuals and the NHS.  From a public health background, Debbie is very interested in the potential for developing integrated pathways that connect primary and secondary care in a much more effective way.  To ensure effective referral guidelines for care should be promoted and GPs should fellow these to ensure uniform treatment. She also feels we need to raise awareness and that as a nation we are not good at talking about embarrassing or difficult topics.  

On Twitter Looploobyloo said, 'GPs think guidelines are set in stone. I had all red flags EXCEPT age. Therefore sent away twice, felt like hypochondriac'

It’s the individual
Stuart is a survivor of bowel cancer who is now an active supporter of bowel cancer support groups and is also a patient advisor to the Welsh Assembly.  He voted for the individual having primary responsibility for early diagnosis.

His brother died of bowel cancer at 31 and his mother at 51. He pointed out that while nobody had ever asked him about his family history neither had he volunteered the information.  One or the other could have led to an earlier diagnosis.  

To reinforce his argument that the individual is responsible, Stuart asked, ‘Why are more men diagnosed at a later stage and die from bowel cancer than women?’ Stuart argued that men were slower to respond to symptoms and presenting with problems ‘is down to the individual, isn’t it?’

Audiologist John Day said he had reluctantly voted for the individual having primary responsibility - although it is a complex and to an extent false distinction.  There is a problem, however.  When it comes to hearing loss, why is it that people take on average 10 years to present with their problems?  

On Twitter Sophie Rees asked, 'is there still a stigma attached to wearing hearing aids?'

John Day was interested in Jackie Ashley’s comment that people are more comfortable wearing glasses than hearing aids, and wondered whether it is because there is an assumption that hearing aids will help hearing the same way glasses help sight, which is not the case.  While a pair of glasses can adjust your sight to “normal”, wearing a hearing aid will not restore full hearing, but it will help individuals adjust to improve hearing.

On Twitter, Alice Lagnado said she 'was informed at company medical tests that had hearing loss...Now wear aid'

Talking about our problems
Mark Flanagan is the Chief Executive of Beating Bowel Cancer and was wearing a badge with a bottom on it. The badge is designed to be a conversation-starter.  Mark said we need to be comfortable and talk about our bottoms.  

On Twitter bexcon said, 'the answer is to normalise talking about bottoms and the habits of. We need to be less British about it'.

Also on Twitter Hannah Berry added, 'bowel cancer symptoms not pretty or easy to live with. Noone should feel embarrassed about discussing. It might save lives.'

Normalising conversation about bowel cancer symptoms is needed to revolutionise the way we manage patients through the system. If people were more comfortable talking about their symptoms, then they might talk to a pharmacist about them who could then have the ability to refer the patient for specialist diagnosis.  

A member of the audience who had overcome breast cancer argued that clinicians need to improve their communication skills as much as individuals and patients.  She was worried by the idea GPs should work according to algorithms and instead wants them to more actively listen.  The problem with trying to focus on pathways and systems is that someone along any particular pathway needs to take responsibility and ensure serious symptoms are examined.  


How responsive is the NHS, and how quickly can it take responsibility for early diagnosis?
There was a challenge to the view that NICE is a body that can fix problems and change the whole system of practice.

An audience member said there were two problems. Firstly, NICE itself is very slow to develop guidance so a problem now can’t be addressed until the end of 2014 at the earliest. Secondly, there is no compulsion on primary care to follow NICE guidance.

If NICE is not seen as responsive, then what about GPs?

One theme that came through clearly in discussion is that growing public awareness of financial incentives for GPs to make saving as commissioners could worsen a perception that GPs are seeking to avoid referrals to specialist advice.

Should GPs be incentivised to capture symptoms?
Stuart, the patient representative on the panel, was very concerned about GPs not referring and being given incentives that might reinforce this.  He suggested that people who are really concerned should be tested privately and then give the bill to their GP.

On Twitter PCole100 noted, 'Bit harsh to blame go for struggling to spot complications following specialist treatment. Maybe specialists need to monitor'.

As in the debate last week, discussion was focusing on GPs sometimes missing serious symptoms - but it was also moving into a more structural criticism associated with the financial incentives.

It was suggested in discussion that the best way to focus GPs was for priorities to be added to the Quality & Outcomes Framework (QOF); but panelist Chris Hawkey questioned whether everything could be included in QOF and philosophically objected to a system that has to pay GPs additional amounts to address an ever increasing range of problems.

Chris Hawkey wanted to be clear that the he was not being anti-GP.  He has come to question the effectiveness of the general medical role in its current form. He feared that the addition of market forces to the primary and secondary care separation will only further widened the gulf between the 2 sectors when several bridges were needed between them, saying that he would like to see a rethinking of how primary and secondary care work together.

Beacon on Twitter said, 'it's sad to think we have to give incentives to GPs to diagnose'

On Twitter MBirty tweeted, 'Market or no Market is not the issue in #earlydiagnosis - need to change attitudes of public and GPs'.

Making the case for investing in early diagnosis
It has become much harder to make the case for financial investment in early diagnosis with the promise of future returns.  It is more difficult because the economic environment has changed.

It is also harder than it used to be because the problem of monetising imagined future savings is not so readily accepted as it was.  Stuart talked again about the need for family history to be understood and while admitting that universal screening could be expensive argued for a focused approach on high-risk groups. Because of his experience, both his children have been tested to see whether they carry the gene - and one does.  His daughter had two advanced polyps at aged 25 and these were found because of his pushing for vigilance in her case.

Stuart said that someone needs to have the courage to put the money up for widening screening to save money down the line.  His fear is that GPs will look to save money from their own budgets and are less likely to be proactive because of it.

One view in the debate is that investment is not made because savings that would be made do not all come back to the Health Service.  Although it may be the NHS or Public Health England that is asked to spend money on screening or other initiatives, the money that is saved will come down the line and will be shared with health, social care spending and social security sectors.

At this point in the debate, the audience were asked to vote again on who they felt was primarily responsible for early diagnosis.  There was a radical change in voting with 15% believing it to be the responsibility of the individual and 85%, the NHS.

Alternative routes to specialist care
Mark Flanagan from Beating Bowel Cancer made the point that some GPs might only see two or three cases of bowel cancer in their whole career.  Looking for symptoms in every case may not be the best way for them to work and alternative routes for treatment are needed, such as referral from the pharmacist or from any health profession who might be concerned by the symptoms they hear described.

A GP in the audience said that he felt direct access was a good idea in principle, but that in practice he felt that people’s description of symptoms were non-specific, people might feel tired or have persistent headaches.  He thinks it would be preferable for the pharmacist to refer patients to their GP rather than direct to an endoscopy department.

Would direct access to specialists improve diagnosis?
Jackie Ashley asked for the instinctive reaction of the audience to the question, and in the first vote 83% felt that direct access would improve early diagnosis against 17% that didn’t.  

On a personal note, I was surprised by the way the conversation was heading and at the initial statistics on direct access.  Although I personally believe that direct access needs to be developed in various forms to identify those not covered by screening and who struggle to get symptoms explored, there are inevitably concerns about whether the current NHS could cope with such a system - and I wanted to raise them. So I did: "Shouldn't we be careful of what we wish for if direct access means lots of people coming to hospital for investigation with not all of them strictly conforming to the symptoms that would ordinarily warrant investigation? Might it not mean that those who did have bowel cancer were too far down the queue to be seen when they needed to be?

“Furthermore, if this strain in the system happened, then "might that not open up opportunities for private providers to come in and provide diagnostic testing?  While this might get through the volume of patients needed, our experience is that it is a very expensive way to test and that it might further fragment the system.”

“Direct access would need to be quite carefully constructed, and a triage process would surely still be needed”.

Chris Hawkey agreed there was a risk of fragmentation if diagnostic investigations were divided across several sectors and argued that instead what was needed was a redesign of the system to enhance integration.  He suggested that Hubs could be created to develop community clinics where testing could be delivered closer to the patient.  This would strengthen integration through the connection of primary and secondary care clinicians.    

Would patients be less embarrassed if there were direct access?
Audiologist, John Day, suggested that people might be less embarrassed about presenting with symptoms if there were specialist direct access. Rather than visiting a GP who they may know, or rather than visiting a familiar surgery and talking about a problem that is uncomfortable, they could go directly to a specialist who has these conversations all the time, removing the embarrassment that might otherwise be felt.  

Chris Hawkey agreed with the sentiment, but reminded the audience that very often people don’t notice symptoms or the symptoms are not immediately visible.  For this reason he thinks that screening is the way forward.

Stuart reiterated his earlier point about men being slow to present with symptoms, and therefore the mortality rate being higher for men. He believes that embarrassment is the cause of late presentation and suggested that men in this country and are literally dying from embarrassment.

Debbie Abrahams said that data showed people on lower incomes tend to report their symptoms later. She worries that direct access will excacerbate inequalities. We need to explore how this problem can be addressed, and one way might be to raise awareness in places where men go to - rather than putting up posters in the doctor’s surgery where we know they try to avoid visiting.  She cited initiatives that had given information at football matches, at pubs and in public toilets.

Would direct access improve early diagnosis?
At the end of the debate, Jackie Ashley asked the audience to vote for a second time on whether they felt that direct access to specialists would improve early diagnosis.  

The vote was still substantially in favour of direct access, but those in favour had lowered. 68% felt direct access would improve early diagnosis and 32% that it would not.

At the end discussion, Debbie Abrahams has the last word.  She made political points.  She feels strongly that the Health Bill will dilute the responsibility of the Secretary of State for delivering a comprehensive health service and she believes the conditions are being created for the privatisation of the health service, including commissioning.  She ended by saying that the problems we have discussed today of early diagnosis would be worsened by the bill.

The third and final debate in our series looking at early diagnosis will take place at the Conservative Party Conference on Tuesday the 4th of October from 12.30 to 2.00pm. You can “listen” and join in the debate by following the hash tag “#earlydiagnosis” on twitter.

The meeting will be addressed by Daniel Poulter, Conservative MP, and consultant gynaecologist. He may challenge Debbie Abraham’s interpretation of the Health Bill.  The meeting will be chaired by Conservative MP and GP Sarah Wooliston, who might question some of the challenge that has been put forward to the GP gatekeeper role in the first two debates.