Living (and dying) in the public eye

I'm conflicted, as they say, on the Jade Goody story. Part of me feels that we should all just leave her alone to get better or, as seems more likely, to spend the little time that she has left with her family and friends. Certainly, if that's what she wants, then people should respect her wishes.

Sadly, it seems that she will continue to be a fixture in the tabloids as her illness takes its course, if only because as one of the new breed of celebs that's how she earns her living and that's the only way she has of providing financially for her two sons, both now and in the future when she may not be around to support them. I hope for her sake that the press voluntarily draws a clear line between stories with which she has willingly co-operated and for which she has been paid, and snatched paparazzi shots of her through car windows on her way to hospital or other intrusion.

In most circumstances the press might have an arguable case that someone who sells stories or promotes themself by revealing intimate details of their private life has renounced their right to privacy. Unwanted media intrusion is part and parcel of the celebrity lifestyle (although the Naomi Campbell case shows there are, quite rightly in my view, limits to this. I think the limit was certainly breached in respect of Britney Spears, during a period when she seemed to be suffering from serious mental health problems, and possibly in Kerry Katona's although in the latter case she is clearly often co-operating with the media. But I don't think their celebrity makes them fair game).

So as I said, part of me feels that we should leave Jade alone and therefore I feel slightly uncomfortable blogging about this. But her case does highlight an important issue, and in this day and age, it often takes a celebrity angle to draw attention to such things. From what I've read in the press, Jade had been treated on three previous occasions for pre-cancerous cells identified in smear tests, the first time being when she was only 16. But when a much more recent test revealed another problem, she was too scared to seek treatment. By the time she did, she had cancer, which has now spread.

There was quite a fuss last year when the Government introduced cervical cancer jabs for 12 year old girls (or, to put it more accurately, vaccinations against the human papilloma virus, HPV, which is one of the key causes of cervical cancer) and some scare-mongering from the usual quarters. But if it helps prevent deaths (1000 women a year die from cervical cancer) and promote awareness amongst young women of the disease, then I'm all in favour.

I'm also pressing the Government to explain why smear tests for 16-25 year olds have been withdrawn, on the basis that they allegedly 'do more harm than good'. I've recently written to the Public Health Minister after a constituent raised the issue with me. It's very rare for women in this age group to contract cervical cancer, but it still seems a step in the wrong direction to remove the right to have a test. Fraser Kemp, the Labour MP, has been a real champion of this cause and had an adjournment debate before Christmas. I don't know who's right or wrong on this issue, but I'm glad MPs like Fraser are prepared to ask questions.

Touch me I'm sick

Speaking of Andrew Lansley, Hopi Sen is having a bit of a go at him on his blog. Hot on the heels of Wednesday's press release calling for less health spending in poor areas, the Tory health spokesman is now accusing Labour of, erm... not spending enough money on health in poor areas. Or at least, not doing enough to tackle lower rates of life expectancy in poor areas.

Lansley says, "if spending on healthcare alone determined health outcomes, Glasgow would be the healthiest place in Britain and Wokingham the least healthy". But the spending follows the poor health... Is he suggesting that the gap between life expectancies in Glasgow and Wokingham wouldn't increase if spending in both areas was exactly the same per head? He makes a valid point that there should be more spending on public health preventative measures in places like Glasgow, but that shouldn't be at the expense of axing current funding for treatment when people do fall ill.

Too much to ask

Breaking news from the Guardian... which doesn't particularly surprise me where Bristol is concerned, but it's very useful to have the figures with which to confirm my suspicions. Although it doesn't necessarily mean that the PCTs who turned down appeals are in the wrong; NICE is there for a purpose, and generally I would back its decisions. But I see its role primarily as ensuring that public money doesn't get wasted on virtually useless products being pushed by big pharmaceutical companies. It gets more difficult when there is clear proof that the drug does have some positive effect, but it comes down to a cost-benefit-analysis, which is roughly based on cost of the drug cf. additional years of quality life. How do you decide whether giving someone an average six months extra is worth £30,000?

The PCT exceptional funding appeals panels are meant to look not at whether someone's personal circumstances are exceptional, but whether their potential response to treatment sets them apart from other applicants. So it's not about whether you've got young children, or have led a blameless life, or whatever (which would get you into very difficult territory); it's about whether you're likely to live longer, respond better, etc. (Correct me if I'm wrong on that, someone).

I had one constituent recently who appealed successfully against being refused the kidney cancer drug Sutent - see my The Drugs Don't Work post from July, and no I didn't really mean that the drugs don't work as one email correspondent thought. On Friday however I was visited at my surgery by another constituent whose father has kidney cancer and is being denied Sutent. The family are faced with selling their belongings to try to fund the drug privately. They could also fall foul of the ridiculous NHS co-payment guidelines, which basically mean that if you pay for the drugs privately, you have to pay for everything privately. (We're doing something about that, thank God, although it won't come quickly enough for my constituent's father.)

Although my constituent's father doesn't live in Bristol, I've said I'll do what I can to support his appeal, along with his own MP. I'm not sure we'll succeed this time, given the NICE interim guidelines. But how do you tell someone what price you think should be put on a year of her father's life?

Living for the city

Don't know quite what I'm doing up at this uncivilised hour on a Sunday morning. Can't sleep. Anyway...

Have been doing a few interesting things this week. On Friday I met GPs from Charlotte Keel Health Centre, who are concerned about the Government's plans for extended opening hours and the PCT's plans for another GP service at Eastville Health Centre. The thrust of what they were saying 'though, is that the Government's primary health care agenda doesn't take into account the differences between running 'normal' GP practices and inner-city ones.

First issue is about funding. They are paid according to the number of patients on their books; they have 17,000. But, they say, whereas a GP service in Westbury-on-Trym might have a similar number of patients, the amount of attention they require is vastly different. In Westbury, an average patient might pop in to see their doctor once a year, if that. They are pretty good at managing their own conditions. At Charlotte Keel, it's a different picture. Many patients have a multitude of problems, from chronic illnesses to mental health problems to what could be termed lifestyle issues (drug addictions, obesity, poor housing conditions). A very high proportion are from BME communities; many have English as a second language or don't speak it at all. A fair proportion are asylum seekers, or failed asylum seekers. So even the process for registering a new patient takes a lot longer, and then there's the need for interpreters, longer appointments, etc. But it doesn't matter whether a patient comes in once a year, or twice a month; whether they take 2 minutes to ask for a repeat prescription, or 20 minutes to explain with the aid of an interpreter what exactly is wrong with them. The funding is the same. (I've had similar representations made to me by the advice services sector - running a CAB in central Bristol is a different kettle of fish to running one in Tunbridge Wells, but they get funded on the same 'average case' basis.)

The second point was about choice. Their argument was - to summarise very crudely, possibly at the risk of misrepresenting them slightly - that choice is a middle-class issue. Their patients don't need extended opening hours (mostly because they don't work, or could take time off or don't like going out after dark) and shouldn't be using walk-in centres because GPs there wouldn't have experience of dealing with people from BME/ deprived communities and they wouldn't be able to explain their conditions to a GP who didn't know their full medical history. (Although some of this could of course be addressed by a shared database). I wasn't convinced by their arguments on these points, but I did appreciate their unhappiness that GPs tend to be portrayed in the media as overpaid fatcats who want to knock off early so they can go and play golf, whereas the reality for an inner-city GP is very different. (Same with solicitors - being a Legal Aid lawyer and a corporate lawyer are completely different jobs - and I speak as someone who's done both - but they get lumped together (although in defence of the latter, they do work incredibly long hours for their hefty pay packets). And a big difference between being an inner-city MP and Sir Somebody-or-Other who represents a leafy constituency in Surrey or Hampshire. But I never seem to get anywhere when I make that point, so let's leave it at that). I'm going to do a constituents survey on GP opening hours soon, and this has served as a reminder that I ought to make sure some of those surveyed live in the inner-city wards.

One of the interesting minor points the GPs mentioned was Vitamin D deficiency. They said it affects a huge number of people on their books, particularly within those BME communities who tend not to expose their skin to sunlight, or, indeed, to go outdoors as much. It can be easily treated with vitamin drops but, the GPs said, it would be far better if these were distributed to people as a matter of course, e.g. given to everyone in inner-city schools, or available for cheap over-the-counter purchase. That would be far more effective than requiring GPs to diagnose a deficiency and then prescribe treatment. I'm going to look into where we are on that issue; I know it's not the first time it's been raised.

The drugs don't work

Or do they?

Not difficult to think of a good news story today. Those of you who saw yesterday's Evening Post will have read about the case of Gary Humphries and his battle to get the PCT to give him the drug he hopes will help him fight kidney cancer. Gary came to see me at my surgery a few weeks ago, and has just emailed to tell me that today's appeal was successful! Great news, and I hope he responds well to treatment.

Also worth reminding people that earlier this week the Government announced a fundamental review of the way NICE works, and an end to the postcode lottery. Would have been too late for Gary, but the PCT's decision today may well have been made with that in mind.

The smoking ban one year on

I have decided that, in the face of the media witch hunt going on at the moment (and from looking at today's Sundays, I don't think there's any other word for it), I am going to have a daily 'good news' item. Again, this is from today's Observer, but I'll summarise some of it here.

Since the smoking ban was introduced, there has been a record rise in the number of people giving up smoking. The figures for April to December 2007 (only 9 months) were up 22% on the previous year. 80% of people think the ban is a good thing. And fears that more people would smoke at home instead haven't been realised. There is also good news about people with lung conditions now being able to socialise without harming their health, and a predicted fall in the number of heart attacks (as happened in Scotland after they introduced their ban).

As someone who voted for the full ban, this makes me feel good.

The report ends by saying that the ban contributed to the closure of 1,409 pubs in 2007, compared with just 216 in 2006. I'd like to see more evidence of this. Has the number of people drinking in pubs gone down since the ban? Or have they switched to pubs where it's easier to smoke outside? I know a few pubs have closed down recently in east Bristol; some have been empty for a while and locals are concerned they're going to be sold off to property developers and turned into flats. But they tend to be in areas which are already well-served by pubs, and I suspect there may just be too much competition for them all to make a profit.

Speeding up drugs decisions

This announcement might have by-passed a lot of people who aren't directly affected at the moment, but trust me, it's really good news. I'm handling quite a few NICE-related cases at the moment, and there is certainly a perception of a 'postcode lottery', which causes additional anxiety to people who are already having to cope with enough without having to fight NHS bureaucracy too.