After care/follow up/care co-ordination?

[angela2]

I had my operation in 2004 and now find it impossible to explain on-going problems to current health care proffessionals. Can other people still access a nurse specialist or co-ordinator to explain complicated issues?

[Hidden]

I think there may be some general issues that affect other people also.

There are about 8000 cases of oesophageal cancer in a year in the UK and there are about 43000 GPs. This means that they come across one case every 5 years on average, and the number of people who have had surgery is even smaller. So discussions with your GP are different from a session where you might be suffering from, say, 'flu! It is much more a case of you knowing your own body and how you have been progressing, and then working out the best strategy in partnership with the doctor.

I think there should be no significant difficulty with ringing the specialist nurses and asking for their advice, or raising issues on a regular check up. They can give you advice, but it is possible that they may ask you to get your GP to refer you back again.

And then there is the issue of when do the surgeons finish their treatment, and other specialists take over? It may be, in your case, that if your issues are connected with ongoing digestion problems, you might be better off going to see a gastroenterologist, preferably one based in the same hospital who has experience of dealing with patients who have had this surgery. Asking the specialist nurses for the name of a gastroenterologist who regularly deals with such cases is not unreasonable, and, armed with this name, try asking your GP to refer you to that gastroenterologist.

Just because you have had this surgery, or have had serious cancer, does not mean that other symptoms for other complaints do not occur. One has to be careful not to think 'What else do I expect after such a major operation?', or 'I'm lucky to be alive anyway so putting up with these things is OK compared with the alternative'. What you do have to do, however, is to keep a careful log of what you are suffering, for how often, and in what circumstances, so that you can give the doctors a very good account of what you are suffering.

There are occasions when people do go back in after surgery to have things adjusted. Having the pylorus sphincter (at the base of the stomach) seen to is an example that affects how food clears the stomach, for instance. But no matter what you feel about re-visiting the hospital (and we all have memories and emotions triggered when we return) it almost certainly won't be so bad this time!

Without knowing exactly what you are experiencing, I think this is the best I can offer. But try ringing our helpline on 0121 704 9860 Monday to Friday 10am - 3pm, or send me a separate message.

I do hope something can be sorted out!

[VerenaSmith]

The National Cancer Action Team are in the process of working up a 'Recovery' plan and I took part in a workshop along with other patients to give input to it. The problem of lack of after care has been recognised, it is particularly difficult when a patient lives alone.

We all need to keep a log of our post operative problems and consolidate them to feed back I think.