What should we expect as NHS patients?

Starting with a blank piece of paper I put down the most important things I expect and what I consider to be acceptable timescales. I concentrated on my needs as a hospital outpatient with multiple chronic conditions as this is a situation I find myself in. (I’ve excluded GP’s, as I very rarely see them, and I’m hoping that in-patient hospital stays are few and far between).

Before reading the list below you might like to have a go yourself and then see where we agree or what additional items you’ve come up with. I’ve ended up with 12 key items. Here they are, in no particular order :

  1. Easy to book appointments/tests/procedures and carried out within a reasonable or appropriate time frame (4 weeks?)
  2. Consultants that make you feel welcome and are prepared to spend sufficient time to answer your questions
  3. Consultants who communicate at the appropriate level of detail. (Communication includes the ability to listen and “hear” what is being said)
  4. Consultants who take joint decisions with the patient. (You are the expert in YOUR health, THEY are the experts in their chosen fields and provide the knowledge to inform decisions)
  5. Good co-ordination between multiple consultants if more than one condition is being managed with a named lead consultant who co-ordinates your care
  6. Ability to make suggestions to / ask questions of / get responses from consultants by email
  7. Follow-up letters sent out promptly
  8. Test results communicated promptly (or appointments organised to go through results as soon as they are available)
  9. Appointments that start on time or if they are delayed then patients are told why they are running late and how late
  10. Provision of a disease/condition specific help line with prompt response time (within 24 hours)
  11. Routine appointments over the ‘phone or by Skype (to save on hospital trips and consultant’s time)
  12. Electronic, transferable, whole life health records with electronic patient access

11) and 12) are more long term aims and probably the remit of the NHS as a whole rather than an individual hospital. If there are any blindingly obvious omissions please let me know. You can tweet me at @crohnoid

…and how does my treatment measure up? Having established the list (and the two aspirations) I thought I’d see how my current treatment measures up against each of them.

1) Appointments are easy to book either on the ‘phone or in person but not all departments are consistent in their approach to routine, six monthly appointments. Some give you the appointment letter there and then; others won’t book further than six weeks ahead so I always make a note in my calendar of when I need check that I’m on the six week radar. So far I haven’t had any problems and nowadays you recieve text messages and/or telephone reminders of your forthcoming appointment.

2), 3) and 4) The communication with the various consultants has always been excellent. I’ve never felt I’m being hurried out the door. We always have a full and frank discussion at a level of detail I can cope with.

5) Co-ordination works well. Letters and emails are always copied between the three main consultants and there is a MDM (Multi Disciplinary Meeting) were patients are discussed.

6) I’ve always received prompt responses to my emails. If I have a question that I think may have implications across disciplines then I copy it accordingly.

7) I did have an issue with follow-up letters from one particular department but a simple email to the Head of Department sorted that out. It’s all resolved now and we’re back on track.

8) There have been a few problems with test samples being mislaid or the original sample not being suitable for testing. One of these occurences meant that I had to have a second bone marrow biopsy, not really an experience you would want to go through more than once. The mere mention of the procedure makes my gastro consultant squirm.

9) Late appointments are the biggest problem, made worse by there often being no communication to the patient as to what is going on. These seem to be worse at Guy’s. The new Outpatients Dept. at St.Thomas’ has large screens all around the waiting area and these carry messages if any clinics are running more than 30 minutes late (although this isn’t always the case).

10) I’ve only had reason to contact the IBD and Stoma helplines. Both have replied very quickly. When I had a problem with my stoma I was able to go and see one of the nurses the same day.

11) Video appointments are more an aspiration than something I think will happen in the very near future. I don’t know at what level the decision has to be taken to implement it –  Departmental ; Hospital Trust; or from the NHS on high.

12) The electronic medical records system works within the Guys/St.Thomas’ (GSTT) itself but they do not have access to my previous records held in Croydon and East Surrey Health Authorities. This was brought home to me when I was admitted to my local hospital. Fortunately I had taken it upon myself to collate this information and was able to pass the key facts to the A&E Registrar and prevent a lot of uneccesary tests that would have just confirmed already known about conditions.

Conclusion

I’m very impressed with the treatment I receive from the NHS at GSTT but it is let down by the lack of communication when outpatient clinics are running late. In the original version of this post (2014)  I gave them a score of 9 out of 10 but now I would reduce this to 8 out of 10 simply due to poor communication on late running clinics (2018).

I have had the odd hiccup along the way but by taking an active role in managing my treatment they have quickly been sorted out and never caused a problem.