"The treatment and care of my wife"

My wife died from pancreatic cancer almost a year ago in the Cynthia Spencer Hospice Northampton.  I have not been able to speak about this until now, but it is time to share some experiences that weren't so good.  The anger is building so much now I have to speak out .  Rachel received chemotherapy in the Northampton chemo suite from September 2017 until October 2018.  Most of the staff and McMillan staff were superb, but there were some things that were not so good and I need to tell you about them.

1) the doctors we saw were very variable.  We had one for a while who was very good but when they left we had another who was not very good.  My wife was profoundly deaf and this doctor struggled to deal with her.  On our second visit, my wife was very up beat and positive, but this person soon put paid to that. They actually started getting very agitated and cross when we asked questions and started shouting and getting angry.  She ended up in tears and this doctor said they couldn't cope and asked for a nurse to come and sit in with us.  They showed no people skills at all. It was all very traumatic and badly handled - my lasting memory was of my dear wife in tears.

2) on one chemo therapy session (in November 2018)  my wife was booked in at about midday.  The usual checks were done after a while and the chemo drug was ordered and was set up all ready for delivery, but then at around 4pm the nurses decided to take Rachel's temperature and decided it was a bit high.  so the whole chemo session was aborted and presumably the drug (which is probably very expensive) was probably dumped.  It was decided after some time that my wife had too high a temperature and so the chemo was not administered and she was advised to go to A&E (really - A&E for a cancer patient!). My question is, why wasn't her temperature taken before the drug was ordered from the pharmacy?

So we duly went to A&E where we waited about 4 hours and then we were told that A&E could not deal with us and we should go to the emergency assessment centre in the Talbot Butler ward.  So eventually a nurse took us to the TBW and the EAC.  We waited at the EAC while the nurse explained to the doctor/nurse at the EAC that we had been sent from A&E.  To our dismay (it was about 9pm now) an argument broke out as to whether we should be seen at the EAC or at A&E and we were in the middle of it. 

In the end I got quite cross and exclaimed are you going to sort something out or not at which point I got what I felt was quite a rude response from the EAC nurse.  In the end we were accepted by the EAC after much arguing and phone calling.  We were eventually seen by a doctor at about 10 pm some 10 hours after first arriving at the hospital.  This was a disgrace and very stressful on my wife.

3) This emergency assessment centre was quite a strange place as it was strictly for patients who were either on chemo or whose last chem was something like within four weeks. Really.   Well my wife had to delay her chemo because she either had a temperature or later on she developed a blood clot in her leg.  She became more ill.  But could I get any help from the EAC? - no because her last chemo was longer than 4 weeks ago or whatever it was.  I even had an argument on the phone with a senior staff member on the EAC when my wife was not well at home. I was told in no uncertain terms that she was not allowed in the EAC and that she should go to A&E.  I don't think this was a good or kind way to deal with some one with advanced cancer whatever the rules may say.  The bottom line was we felt isolated and alone. The best of it was that when we went to A&E and waited for hours, the doctors there said we should go to the EAC - not joined up at all. A bit of a disgrace really wasn't it?

4) Eventually my wife was admitted to hospital in December 2018 as she had severe abdominal pains and her legs swelled up.  We saw a nice doctor in A&E and then she was put on a ward.  Here I was told rather bluntly and coldly by another doctor that by the way we won't resuscitate your wife if she suffers a cardiac arrest.  OK I thought.  After a week in hospital she was transferred to the Cynthia Spencer Hospice where she later died a few days after Christmas.

5) Another thing that concerns me a great deal is that there was no attempt to find out what had caused my wife's cancer.  When people die in more unusual circumstances, there is an inquest, but this is not the case with cancer. Its ' oh well it was cancer and thats that' no need to investigate further. Really.  Well I would like to see some better follow up and investigation as to what caused it.  Was it genetic as her father had died only a few years before of the same disease.  Or was it some thing they had eaten - they had a fruit farm so was it pesticide ingestion over a long period.  A bit of a coincidence both of them dying from the same disease don't you think?  I asked about this but was met with disinterest.

6) Finally what about me.  I was left bereaved without the person i had loved for 30 years.  We did everything together and now the world was a cold and lonely place indeed.  But I had no help, no call from McMillan or the hospital or from my GP nothing.  I phoned CRUSE the bereavement organisation but they said they could not help as it was too soon.  So in my greatest hour of need they couldn't offer me support.  I phoned an organisation called WAY UP but they were for either people under 50 or over 60.  I was 52.  In the end I turned to drinking and it was not until my workplace who were very supportive, suggested that I have some counselling and saw my GP which I did, did things become more stable.

I thought I would share this story with you as I thing there needs to be some changes in the way that NGH deal with cancer patients, especially the EAC.  Some staff seem to be so off hand sometimes which comes across as very unkind.

Regards,