nhs

Miscellaneous notes on North Wales

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This is the one final holiday post before I get on with writing about the other things we’ve done on this holiday. It’s a few assorted notes and observations from our time away.

North Wales is popular with dog owners

If you want to bring your dog on holiday, then North Wales seems to a popular choice. The cottage we rented was dog-friendly, with hard floors in most of the rooms, and in Llandudno we saw at least one hotel specifically marketing itself as dog-friendly. In fact, there was even a dog toileting area to the side. Alas, I didn’t catch the name of it, and can’t find it on Google Street View, but I think it was on Church Street.

We certainly saw plenty of people out and about with their dogs.

Charging our electric car wasn’t much of an issue

Getting a new electric car less than a week before we went on holiday was an interesting decision in retrospect, but we coped well. Whilst there are literally no public chargers in Conwy, and we weren’t permitted to charge it at the cottage we rented, there were a couple of rapid chargers a few minutes away in Llandudno Junction. These kept us going when we couldn’t charge on days out, however, several of the places that we visited did offer public charging. We only had to go out of way once to charge up; the rest of the time, we fitted our charges around the activities that we’d planned.

Signage is in Welsh first, then English

North Wales has a higher concentration of people who speak Welsh as their first language, than other parts of Wales. So, Welsh tends to appear first on road signs with English beneath. This isn’t universal, and elsewhere in Wales it’s English first. And whereas in Ireland, where the Irish text on road signs is in italics, both the English and Welsh are in the same font, same colour and not italicised. I don’t speak Welsh – I tried it on Duolingo for a couple of weeks before going back to French – and so reading signs took a little longer as I had to look where the Welsh stopped and the English started.

Christine, meanwhile, is still learning Welsh on Duolingo.

It’s also notable that all the Welsh signs instantly disappear as soon as you cross the border back into England.

The Welsh NHS is separate to the English NHS

I forgot to pack any spare hearing aid batteries, and so needed to find somewhere that sold them. Being English, I went to the nhs.uk web site to find somewhere that would sell them, but it turns out that, despite ending in ‘.uk’, nhs.uk is just the web site for NHS England. So when I searched for nearby pharmacies, for example, all the results were in Cheshire and Merseyside.

Healthcare is a ‘devolved’ matter in the UK, and so the regional governments in Wales, Scotland and Northern Ireland have their own branches of the NHS. (Technically, it’s not the NHS in Northern Ireland but HSC instead).

NHS Wales confusingly has two web sites. The main NHS Wales web site, at nhs.wales, is more of a corporate web site – if you want health advice, or to find services, you need NHS 111 Wales, which is at 111.wales.nhs.uk.

I know NHS England is being abolished but you would expect a web site called ‘nhs.uk’ to apply to the whole of the UK, and not just England.

For completeness, health advice in Scotland comes from NHS Inform, at nhsinform.scot, and in Northern Ireland, it’s part of NIDirect.

Reluctantly opting out of care.data

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A screenshot of the faxyourgp.com web site

I wrote this article before the six month delay was announced yesterday. However, most of it still applies, so read on.

Yesterday, I reluctantly opted out of having my medical records shared with third parties. I’ll explain why, and how to do this yourself.

NHS England are compiling a new database called ‘care.data’, which will be available for health professionals, universities, drug companies and insurers to use. The main aim is for medical research, which could be ethnographic, or to look at individual cases for the advancement of healthcare and treatments. The NHS, being a mostly-integrated system which is used by a vast majority of the population, means that it is almost unique amongst healthcare systems in the world in providing cradle-to-grave care. The data produced by the NHS could be really valuable and lead to better health and wellbeing for everyone. Further information is on the NHS Choices web site, and this article in Nature explains why it is a good idea.

On this basis, it seems like a good idea. But whilst the idea is good, the execution isn’t.

The major issue is privacy. To compile this database, the full medical records of everybody who is registered with a GP in England will be imported into this database. You would expect, therefore, for this data to be anonymised; it is, but only slightly. Your name will be removed, but your date of birth, full postcode, NHS number and gender will still be included. That will still make just about everyone in the database uniquely identifiable.

For example, I work at a university – indeed, one where the data from such a database could be really useful, as we do medical research. In fact, I’ll make a shameless plug for our Crocus Cancer Appeal whilst I’m here. Anyway, we have a student database, and, given someone’s’ postcode and date of birth from their pseudo-anonymised medical record, I reckon we could match 99% of those records with our student records. So it’s not at all anonymous. And there’s a particular worry that insurance companies will be able to access records, which could make it very difficult for some people to obtain life insurance.

To make matters worse, this is an ‘opt-out’ scheme rather than opt-in. If you do nothing, then in just a few weeks your data will be irrevocably added to this database, at which point, you will not be able to opt out if you change your mind.

Unsurprisingly opposition to this has been growing. A petition on SumOfUs.org has over 250,000 signatures, and there are concerns from the British Medical Association and the Royal College of GPs. In particular, there are concerns that only around a third of adults recall receiving a leaflet about the changes (I certainly don’t remember receiving one) and that there is no form to opt out. Others are worried about the potential for accidental data leaks, or for information to end up in the hands of organisations like GCHQ or the NSA.

So, although I’m in favour of the general idea, and agree with the spirit behind the database, I have contacted my GP surgery asking for my medical records to not be included in the care.data database. Because I’m worried that my medical records could be abused or used in a way that would not be in my best interests, and because this is my only chance to opt out. I can’t just wait and see what happens, and try to opt out later, as it’ll be too late.

I hope that changes will be made, which will maintain the usefulness of the data whilst respecting the privacy of the people whose data is being used. In particular, a greater level of anonymity, perhaps with more vague dates of birth (month and year only) and less accurate postcodes (sub-districts rather than exact areas). And people should be able to opt out at any time, not just at the start of the project. If these changes are made, then I may consider opting back in.

So, if having read this, you also want to opt out, then the easiest way is using FaxYourGP, which will send a template fax to your GP. Alternatively, medConfidential has a form and covering letter which you can use. Whilst you can write your own letter, there are certain codes that you will need to include in your letter which is why I’d suggest using one of the two methods.

It’s sad that I feel like I need to opt out from what could be a great resource, and I’m angry that it has been managed so poorly.

The blood donation interval study

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A screenshot of the web site for the Blood Donation INTERVAL study

I’ve recently volunteered to part of the INTERVAL study, which will look into how frequently blood donors can give blood.

At present, the guidelines are very rigid: men can give every twelve weeks and women can give every sixteen weeks. What the interval study aims to do is allow some people to donate more frequently, whilst monitoring samples of blood taken at the donation. The hope is that, in future, regular donors will be able to give blood more often than at present, boosting blood stocks.

The NHS Blood Service is already facing challenges. The recent heatwave in the UK has led to fewer people giving blood and current stocks of O- and B- blood groups are critically low (less than four days’ worth). The UK also has an ageing population with people living longer, and more blood will be needed to support the very young and very old who can’t donate themselves. And despite recent drives to recruit more donors, only around 4% of people give blood.

Some other EU countries already allow people to donate more frequently. In Austria, it’s eight for men and ten for women. However, there may be factors that affect how regularly individual people can donate, which is why samples will be taken at each donation. This may mean that, following the outcomes of the study, some people will be able to donate more frequently than others. What is most interesting about the study is its size: in total, 50,000 regular donors are needed – 25,000 men and 25,000 women.

I’ll admit that it took me until last year to give my first pint of blood, but I’ve donated twice since then, and agreed to be part of the interval study. Of course, with my luck being as it is, I’m in the control group and can therefore still only give blood every twelve weeks. But some men will be selected to give every ten weeks or even every eight weeks. Women will be able to donate every sixteen weeks (the control group), fourteen or twelve weeks.

There are a few caveats with the interval study. Firstly, you will have to, as far as possible, keep to the regular donation cycle that you have been placed onto with minimal variations. Secondly, the study is for two years, so you will need to sustain the regular donations for this period. Finally, the donations you make will need to be at one of the 24 dedicated blood centres in England; thankfully there’s one in Bradford which is within walking distance from work. But my friends in York would have to go to Leeds, for example.

Hopefully the results of the interval study will confirm that it is safe for people to donate more frequently. Until such a time comes when we can safely and efficiently manufacture replacement blood, our hospitals are reliant on a regular supply of blood from donors. Being able to make optimal use of the small minority who do give blood regularly will benefit so many more patients in urgent need of a transfusion.

If you don’t already give blood, you can find more details on blood.co.uk.

The benefits of joined-up IT systems

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Today I went to my local GP regarding a lump which I have had at the top of my natal cleft (or ‘arsecrack’ to you and me) for a number of weeks. It turned out to be a pilonidal sinus, a somewhat rare condition affecting 0.026% of the population, but one that is thankfully curable with minor surgery.

Although I have a diagnosis from my GP, it will still be necessary to have an appointment with a consultant at one of our local hospitals (in this case St Luke’s Hospital). Until very recently, arranging an appointment with a hospital consultant involved:

  1. Your GP sending a letter (or sometimes a fax) to the consultant’s secretary
  2. The consultant’s secretary then writes to you asking you to make an appointment
  3. You then telephone the consultant’s secretary to make the appointment

Reliance on the postal services means that this can take a week.

Thankfully we now have the NHS Choose and Book system, part of the much-delayed and massively over-budget NHS National Programme for IT, described as “the world’s biggest civil information technology programme”. All of the backwards and forwards with letters has been replaced with a web site, which allows GPs to book appointments with consultants instantly online, often with the patient present like I was to day.

This is especially welcome at this time of year, where the postal service is recovering from a series of strikes and has the additional burden of Christmas deliveries. Consequently, I was able to choose an appointment before the Christmas Holiday; I also had a choice of hospitals. Furthermore, I also have instructions for accessing a web site which will let me cancel my appointment online, should I need to.

This is a clear example of a change which has reduced the administrative time of both my GP’s practice and of the hospital consultant, and has resulted in the patient being seen more quickly. And it’s exactly the sorts of issues that a good IT system should aim to do.

I’ll let you know how my I get on with my ‘arse lump’.

Hospital visit

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I had my first ever emergency admission and overnight stay in hospital on Monday night. Basically it was an asthma attack, but one that was so serious that my own medication couldn’t tame it, so Hari and I took a taxi to the A & E department at Bradford Royal Infirmary, where I was nebulised and stabilised.

I ended up spending the night, and most of the following day, at the hospital, and for a lot of the time I was on oxygen. But thankfully by yesterday afternoon I was good to go home and was discharged in the evening. I’m now feeling much, much better and my asthma symptoms have subsided dramatically, so I’m all well again.

As this was my first hospital visit, here’s the good and bad things about my visit:

Good:

  • A lot has been said about hygiene in NHS hospitals. All the rooms I was in looked very clean, and there were anti-bacterial handwash dispensers quite literally everywhere you looked. Hygiene is obviously taken seriously here.
  • The staff were, for the most, part very friendly and helpful – the A & E staff especially.
  • Food wasn’t bad – better than I expected at least.
  • All the beds had Patientline terminals, so a payment of £5 for the day got me my own personal phone number, about 20 Sky TV channels plus some radio channels, and internet access. It certainly helped to pass the time and let me update my friends via Facebook.
  • And this is the NHS so all of my treatment was free. When you’re hyperventilating and waiting to be seen, at least you only have to worry about getting better and not whether you can afford the treatment, or whether your insurance will cover your treatment. We’re very fortunate to have the NHS in this country and I don’t think everyone appreciates just how lucky we are to have it.

Bad

  • There was a shortage of beds, so when the decision was made to keep me in at about 1am, it wasn’t until 3am that I was on a ward. And then I got woken up by the ward doctor at 4:30am to go through my symptoms, and with all the beeping machinery and people being moved around I didn’t get an awful lot of sleep while I was there.
  • There were about 25 people on my ward, all in the same room, and it was a mixed ward. I’m not too worried about this but there was a patient who was being quite loud and abusive, which isn’t quite what I wanted. But hey, it’s free treatment – can’t have everything.
  • It took about 3 hours from the doctor saying I could be discharged to me actually being able to get my coat on and leave. Admittedly the staff were busy, but it would have been nicer to be back home at 5pm, not 8pm.

Still, on the whole I had a good first hospital experience, and I’d like to thank all the staff there who helped me get better. Especially the A & E staff who were very friendly and helpful. And thanks to Hari who was very supporting during my time of need.