NHS appointments are a mess

There has been much discussion recently about fining people for missing NHS appointments and the consensus seems to be that people have no excuse for missing them and it is only fair that they should pay a fine when they do so. 

My experience suggests that it is quite easy to miss them, because the appointments system is a mess, and my situation is much simpler than many people's.

I am documenting my views here so that I can easily share them as and when required, starting with the hospital's Patient Advise Liaison Service.

My appointments cycle

I have one underlying condition that is being managed by one hospital. I continue to see my GP for other things like the recent flu and Covid booster jabs.

This condition means that I need to see one consultant every three months and another every six weeks with the second visit followed by a treatment session the following day. I also have two scans every other treatment cycle, i.e. once every twelve weeks, which are done at a separate site.

That means that at any one time I have five future appointments booked.

Different appointment systems

The big problem is that there is no consistency in how these are managed:

• For the two consultants appointments I get paper letters and they also appear in the NHS app, which means that I get automated reminders by text
• For the two scans I get paper letters but nothing else
• For the treatment sessions I have an appointment card (!) which gets updated by hand each visit.

The only place all these appointments are consolidated is on my fridge where I store all the letters and appointment card in date order. 

I also put them all in my online calendar manually which is prone to error (more on that later).

Other issues

There are several other niggles in the systems that while are not significant in themselves they all add to the friction in the system and increase the chances that errors will be made. One such niggle has already caused me to get one appointment wrong, luckily I arrived a day early so no really damage was done.

Where electronic communications are used, e.g. NHS app, this just points to a message that is in the form of a PDF file that contains an image of the letter, i.e. it is not possible to simply cut and paste the appointment details in to a personal calendar. 

Many apps that I use, e.g. MeetUp, have an "Add to Calendar" function and NHS app should be able to do this too.

There are inconsistencies in the naming of locations within the hospital, e.g. letters refer to "Oncology & Haematology Outpatients” whereas the signage in the hospital says Haematology & Oncology Outpatients (HOOP)", and the two letters for the scans 

The letters for the scans give the data (dd/mm/yy) but not the day of the week, which is how most people refer to dates most of the time, e.g. it says "31 October 2024" rather then "Thursday 31 October 2024".

The two letters for the scans have slightly different descriptions for the same address. They also use different sized fonts. which may be an attempt to keep all of the main information on the front page.

I sometimes get automated reminders to my landline! I did not know that the hospital even had this number much less intended to use it. I am not sure which appointments these are for as I never listen to the whole message once I know who it is from.

Summary

Three things should happen:

1. The NHS app should be used for all appointments
2.  The app this should link to personal online calendars
3. Appointment letters to patients should be reviewed for consistency and clarity.

Change NHS: A consultation

Introduction

The new Labour Government has said that "Our NHS is broken, but not beaten. Together we can fix it." and has launched a consultation to start the process (I would have gone with money first but that's another story). 

I wanted to respond to that consultation for several reasons, notably because I have worked with business change through IT for most of my career and also I am quite involved with the NHS as a patient at the moment. The NHS matters to me and I think that my views on it are relevant.

I am putting these views in my blog so that I have a record of what I said and I can also share them easily when I want to.

The consultation is online at change.nhs.uk.

The 3 shifts

The consultation covers the 3 shifts, widely trailed before, as"big changes to the way health and care services work – that doctors, nurses, patient charities, academics and politicians from all parties broadly agree are necessary to improve health and care services in England".

These are:

1. moving more care from hospitals to communities
2. making better use of technology in health and care
3. focussing on preventing sickness, not just treating it.

The consultation then asks questions on these. I quote these questions and give my answers.

Q5. In what ways, if any, do you think that delivering more care in the community could improve health and care?

There appears to no rationale behind this idea other than the slim possibility that because more appointments are more local then fewer will be missed. Specialised services are provided through large hospitals for several good reasons from economies of scale to the frequent need to treat patients will multiple conditions.

I see no health and care benefits in doing this.

Q6. What, if anything, concerns you about the idea of delivering more care in the community in the future?

Healthcare provisions is already fragmented, e.g. dentistry and optometry, and having separate centres for other services risks further fragmentation with the need to visit several centres for one condition.

Small units are likely to be inefficient, e.g. a surgery facility at a GP surgery will either be over staffed to ensure that it meets all demand or under staffed at some times leading to more waits.

People often have multiple needs and being co-located means it is easier to address them at the same time, for example, to get an unplanned x-ray for a patient. When working on Business Transformation we called this "one and done", i.e. fix everything on one visit.

Small specialist units will focus on the one thing that they do and will lack the patient's full context to provide the best service. This happened to me when a private surgery unit missed the possibility of skin cancer and this went undiagnosed for a few years. This fragmentation may kill me.

Q7. In what ways, if any, do you think that technology could be used to improve health and care?

Again, the described benefits of this are weak at best and they are all claims made about other large IT projects that spectacularly failed to deliver. I have worked on some of these and the example of Horizon at the Post Office is fresh in our memories.

The idea that patients need only tell their story once misses two very important points, each specialist needs to hear and questions a different part of that story and that story will change over time (do you smoke, what medications are you taking, how active are you, how stable is your weight etc. etc.) and so it must be retold for accuracy.

Using AI to review scans is an obvious thing to do but it is hardly transformational. The only way that this could help significantly would be if we took lots more scans but that would be an additional cost on the NHS.

Technology is too often portrayed as a magic wand, it is not.

Q8. What, if anything, concerns you about the idea of increased use of technology in the future?

I am concerned that the benefits are overstated and could not be delivered without substantial additional investment (beyond the basic hardware, software and networks) in things like data cleaning and ID cards.

The basic technology, e.g. exchanging packets of data between systems, is easy but does not help because the data quality is pretty low and inconsistent and so sharing it will only make things worse.

I have worked on large IT systems with simpler data, e.g. spare parts held in stockrooms, and every project had to start with a large data cleaning exercise and even that does not solve all of the problems as some of the answers are unknown, e.g. a supplier code does not match any code used by any supplier. Similarly in systems involving people you will often find several dates of birth of something like 01/01/1900 where people have made up data just to get past that screen. Or, even worse, used a special data as a code for something else that has been long forgotten but which is useful.

There will be significant inconsistencies in the data between systems. To pick another example I have direct experience of, there is not a standard list of Nationality codes so things like the Census and Schools (both part of UK Government!) use different lists. These lists also change over time so while a younger person may be identified as, say, Bangladeshi their parents may be just Asian. I picked this as a simple, easy to understand example, other parts of health data are far more complex and far more prone to inconsistency. Agreeing standard lists will help but will take time and will make the data cleaning longer.

And one key part of the data is missing, a unique identifier for each person. Who remember's their NHS number or carries a card with it on? A national ID card system could help (after a lot of time and money) but there will always be gaps, e.g. recent arrivals.

I would be very surprised if you could get the data at sufficient quality to share in less than eight years and employing thousands of people for that long is expensive.

Q9. In what ways, if any, could an increased focus on prevention help people stay healthy and independent for longer?

This is where the focus should be, though not necessarily for the reasons given. We should enable people to be healthier so that they can live more fulfilling lives, not just to save the NHS money. People play sports for fun not to keep out of hospital.

The consultation gives no idea of the scale or ambition of "tackling the causes of ill health" but these need to be bold to first address recent declines in population health (e.g. obesity) and then to significantly improve them.

That means being brutal with manufacturers and retailers over things like smoking, processed foods, alcohol, etc. We know many of the major causes of ill health and should address these seriously.

Going back to school lunches for all school pupils and breakfasts too for primary pupils would be a major boost to wellness and is probably the easiest and quickest option the Government can implement.

In 2023, there were 132,977 casualties on UK roads. We must do a lot more to address this, including stricter enforcement with harsher penalties and redesigning roads to manage out traffic.

Managing out traffic is a win-win as it reduces traffic accidents and also encourages people to use other and healthier means of travel. In the early 70s I went to an edge of town secondary school and hardly anyone went there by car, we need to get back to those days.

Q10. What, if anything, concerns you about the idea of an increased focus on prevention in the future?

My concern is that the Government will back away from the big necessary changes under pressure from lobby groups claiming that it is trying to implement a "nanny state". If these measures are to work then they must be bold.

Humanist Debate: Irrationality in Healthcare

I joined the British Humanist Association (BHA) recently, too add my voice to those opposed to the inappropriate imposition of religion into many aspects of our lives, and have started to get involved a little by attending lectures and debates.

The BHA has a regional organisation and I am in the South West London Humanists Group which runs its own events, including a monthly discussion in the conveniently located Old Ship pub in Richmond.

The discussion in November was led by Dr. Ed Presswood from The Secular Medical Forum and was on Irrationality in Healthcare.

He described a range of non-scientific practices used by the NHS, from not having A&E beds numbered 13 through to performing circumcisions on babies.

Along the way we learnt that a hangman's noose has 13 knots, some Irish do not like to be discharged on a Saturday as "a Saturday flit is a short sit" and religion still interferes with health by, for example, blocking right to die campaigns.

We were then asked to consider where the NHS should draw the line on irrational behaviour and we did this in small groups before coming back together for a summary at the end.

What follows are some scraps of notes taken during the discussion embellished by some further thought.

Science and Religion have their own views of what is right and it is impossible for one to persuade the other of their version of the truth. Therefore we often have to work in the middle and accept that we are not going to agree. If you are worried about number 13, or any other superstition, then I need to respect that. I might want to convince you of your folly but, in a health situation, this is secondary to your wellbeing.

If we are to be intolerant of the number 13 then perhaps we should stop lying to children about the Tooth Fairy and Father Christmas.

I am very much on the side of science but we have to accept that our science changes and what was right, say, ten years ago is not always right now. Thalidomide was right once.

Patients are allowed to refuse a good treatment but cannot demand a bad one. If the good treatment is refused this could be traced back to bad education in which case we have to consider whether the patient is truly making an informed choice. Does an informed choice ever exist in this context?

If scientific logic is important to the NHS then we should beyond the simple medical. For example why do they serve meat when this is a grossly inefficient use of the planet's resources and is unnecessary for wellbeing.

I was somewhat surprised at how often money was suggested in the discussion as a means of moderating behaviour, e.g. getting people to pay for things that the NHS would rather not do. This approach always means that the rich can (continue to) do what they like and only the poor have their behaviour moderated.

I guess that just because we were all Humanists that does not mean that we agree on everything else too.

I enjoyed the conversations but I think that the question we were asked to consider was a little to side for us to get anywhere near any meaningful conclusions. Not that that mattered, I was there for the ride not the destination.

I'll be back there for another ride on another topic when my diary allows me to do so.