Chemo Clinic - Any Help Appreciated

[Nardobd]

Hubby has advanced PC and is currently undergoing chemotherapy. We've had two occasions recently where we've had to contact the clinic. Inevitably when we ring the phone diverts to voicemail. We leave messages which are completely ignored - the only time I had a call back was when I lost my temper and threatened to make a formal complaint after trying five or six times to get some information.

Added to this, we are often kept waiting for hours on end when he goes for treatment - the worst experience taking 7 (seven) hours! When I asked why there was such a delay I was firstly told that it was the lab had taken the time to make up the chemo and then that it was due to a staffing shortage of nurses in the clinic.

This week, I was worried about hubby having a reaction to the chemo. I rang the 'emergency' number and was told to go to A&E/ER. We arrived before 11 am in the morning and hubby signed himself out AMA at 4:30. We were told that the clinic have made an appointment for hubby to see consultant tomorrow. After asking four times, they still haven't told us when the appointment is - not even morning or afternoon!

I'm convinced the local PALS (patient advice and liaison service) is really a public-relations department for the hospital and I'm on the verge of going to the local paper. Before I take that rather drastic step does anyone have any other ideas as to how I can achieve what really should be quite simple - namely efficient treatment and provision of necessary information?

[Support Team]

Oh dear, how I sympathise. Went through all that 6 years ago and hoped things had improved since then

talk to the hospital cancer patients user group or liaison group or patient partnership - this is different to PALS. It is a committee of cancer patients/carers (with nurses and other hospital representatives) wanting to ask for or help get service improvements

where they exist this is just the sort of issue they try to get action taken on ie reducing waiting times and ensuring people can get information about appointments and trying to fast track patients through A&E to be seen by a cancer specialist to avoid risk of infection etc.

Is there a cancer information centre or macmillan nurse at the hospital - try them as well

You should have a designated "key worker" normally a specialist nurse whose job is to sort out all these problems and ensure appointments come through in time and can provide information and help with problems. They normally have a bleep number as well as a phone number.

Hope all starts to go more smoothly for you

[Nardobd]

Thank you. We sat down with the Key-worker yesterday and gave her a list of problems encountered. She is going to speak to the head of the chemo clinic and we also spoke to the pharmacy head of chemotherapy who explained why the drugs take so long to make up. It doesn't actually resolve all of the problems, but it does help to know why there is such a long wait. Some of the issues will also be brought up to the management which may result in improvements. I'd encourage others to do the same - the more we speak out about things which cuase added stress, the more likely improvements to the service.

[Support Team]

so pleased you were able to do that

I remember sitting in chemo clinic after long delays waiting for drugs due to shortage of pharmacists and reading New Scientist which had an advert for trainee pharmacists and seeing how low the salaries were!!

we also had problems accessing blood transfusions when off chemo. It was great to be contacted by someone running Reading half marathon offering to support us but she was mainly asking people to sponsor her with a pint of blood as her father had needed countless pints of blood during his treatment - what a wonderful idea!

[Nardobd]

This week we went to the clinic and our problems have obviously been noted. We got a much more welcoming reception than normal and the wait was only just over an hour, which is acceptable given that they have to make up the chemo treatment after it's been authorised. We both feel much better for having vented our feelings too!

Yes, I think the idea of sponsoring with a pint of blood is great. Sometimes it's not just about the money and I wonder how many sponsors went on to keep on donating blood - what a wonderful and long-lasting benefit from the run!

[Nardobd]

After waiting for another 6 hours in Chemo Clinic this week, I blew my top, contacting everyone I could think of (including PALS), threatening to take the issue to the media and, possibly, trying to bring a legal action on the basis that, given Ted's hospital phobia, they were effectively withholding treatment because it is impossible for someone with such a phobia to wait around in a hospital for so long.

Supposedly before we complained previously, this was all under review (I have my suspicions about that but I really don't care) and our local hospital is changing the way they deal with chemo from 11 May. Patients will go in one day for their review and be given an appointment time for the following working day. The chemo will be ready at that appointment time, a chair will have been booked and there should be no waiting around for hours on end. In Ted's case, PALS have arranged a meeting for us on Monday with one of the clinic organisers who has, apparently, agreed that in Ted's case the arrangement can be brought forward to start immediately. Clearly my opinion of the PALS organisation was completely incorrect and I apologise.

Admittedly, it's only a small victory but it does mean that I have a few extra hours with Ted each week and, as you will all appreciate, time is so very precious.

Nicki