Operation pushed back

[Saracen]

Posting on behalf of a neighbour who has asked me to help her write a letter to her son's consultant. Sorry to be vague - so far she and I have just had a brief phone conversation so I don't know all the facts.

Her young adult son has a serious chronic illness, life-limiting eventually but he is doing OKish at the moment. In the spring, his specialist first suggested an op for him and scheduled a pre-operative assessment to take place three months later. They attended the pre-op in July, which went as expected, and they were led to believe he'd have the operation soon afterward, but were never given a date for it. At an appointment recently they were told he can have the op in January after he has another pre-operative assessment.

My friend and her son are getting fed up waiting. They are resigned to waiting until January now, as it isn't really urgent and they know everything will slow down in the run-up to Christmas. But she wants to ensure that it actually does happen in January and they don't get messed around any longer.

I'm happy to sit with her and help her lay out all the facts in a letter and ask that there are no further delays, which is what she wants me to do. But I am wondering whether this is the best or only avenue. I don't really know the workings of the NHS. Will it be the consultant himself who is responsible for the delay, do you think? Is it worth pressing him for the actual reason for the delay? Is there anyone else to whom she should be writing in order to get the ball rolling? (My dh - who knows no more than I do about these things - says they ought to involve the GP at this stage.)

It may also be relevant to mention that my friend's husband and other son also have the same disease(!) and so it seems wise that she should get clued up about how these processes work and what to do when their treatment seems to be on the back burner. Sadly, I expect she'll be fighting their corner many times in the coming months and years.

You could suggest she goes and talks to PALS (Patient advice and liasion service) at the hospital. My GP told me they are usually useful.

Suggest the same. I would write an email and copy it to the consultant's secretary, PALS and the hospital chief executive.

I think you will at least get answers quite rapidly.

Having said that I had surgery earlier this year and got cancelled the morning I was due in. The second date I was given was almost cancelled but eventually was admitted literally an hour before I went in to theatre and had no bed to go to until I came out of theatre (so I believe!). The problem is that the hospitals are running on full capacity with no slack in the system for emergencies.

I ended up in the bed next to the lady who'd bumped me off the first time. She'd had a huge cerebral bleed and her need was definitely greater than mine. However, I agree the lack of information is maddening.

Thanks to both of you!! That is very helpful.

She can phone the consultant's secretary and find out what's happening with the waiting list and their appointment.

Cheers Pobble! That is what she has been doing, and the secretary is unhelpful so that is why she wants to write.

Today I sat down with my friend to look at her son's notes and letters and get her to explain. It turns out that both a consultant and a surgeon are involved, and the problem appears to be poor communication between the two. The surgeon wants the go-ahead from the consultant; the consultant says he never heard anything from the surgeon. Now the patient's notes have gone missing. I don't suppose the missing notes should be a major obstacle, but it probably contributes to the inertia. I expect that when a doctor doesn't have a file sitting on his desk it is easier to forget about the patient.

I think we'll write both doctors expressing concern over the delay, and then if she rings both secretaries regularly perhaps that will help move things along.

My friend said that a while ago, her son was "forgotten" for more than a year and this is why she is concerned, in case that happens again. They sometimes get him confused with his brother, who has the same consultant and surgeon. He had to have two investigative procedures prior to surgery - and those didn't happen quickly - and if there is much more delay then he will need to start the whole process over by having those repeated.

She'd never heard of PALS, so that will be useful info to pass on to her too.

Hi- If she went in made an appointment at PALS I think they'd be able to do all that for her? Might be less work. I think, they are set up to sort out mix-ups like this rather than it becoming a complaint?

I agree. PALS actually carry a lot of clout and will get the right hand talking to the left so to speak.

Thanks, I'll tell her!