This Sundays Telegraph

[thehusband]

Hi, if anyone reads the Sunday Telegraph there will (should) be a few lines about my (late) wife Christina and my complaint to the Ombudsman regarding her treatment...well some of it.

The Patients Association are going to highlight part of it in a report they are doing about the PHSO, and without going into long detail my complaint centred around the following:

Our original Oncologist basically gave up on us after 1st recurrance, telling us not worth having more treatment as it wont work. So we battled her (Onc) as well as the cancer, ended up at the Marsden (no complaints and great help) - but fate took us back to our original Onc.

Basically this Onc didnt advise us when Christinas CA125 took a massive drop so we missed out on continuing a particular treatment, wouldnt do a scan to see what was happening and 2 months after seeing Christina and saying she was very well - took it upon herself to stop treatment without having seen my wife since saying she was very well, wrote to the Marsden, our GP and community nursing to say that Christina was too frail for further treatment (at that stage she wasnt), no treatment would work etc etc.....as i say this was done without our knowledge and without the Onc actually having seen my wife for over 2 months. When we found this out and asked for a referral to a Prof that said he would see and treat Christina....our Onc wouldnt refer her and subseuently Christina went into a big depression and kinda gave up.

So thats the basis of why i complained.....the PHSO have done everything except to look at the facts and i am currently waiting for a review from them, though i wont be holding my breath.

Take care one and all

Laurence

[TinaB1]

I really hope you get the explanations and answers you want Laurence. I think it's a hard thing to feel left out of treatment decisions. I always think that when I got this disease, my husband did too in some ways and I know you both entered this journey together. It's good that there are avenues to make sense of what happened and I think it's right that there should be openness. As you say though, (I think that's what you mean), patients don't always get that. I'll get the Telegraph on Sunday in support. It really is something that you're doing what you are. x

[thehusband in reply to TinaB1]

Thanks.

[daisies]

Laurence. Can't really say anything, except you are brave & loyal to Christine. Not only do you have to grieve and cope with her death, but knowing that her main health care provider!!!/oncologist did not do her best for your wife is tough.

I know that going public and having publicity and taking action will not bring her back, but it is a great thing to do. I know that doing this will also raise awareness of O/C, so thank you.

Best wishes,

Daisies.

[thehusband in reply to daisies]

Thanks.

[HerThing]

Hi Lawrence, I can only imagine how difficult this must be for you. By my own experience I know how hard it is to accept the passing of our wonderful wives, but to also have this uncertainty to deal with is simply sickening. i will take a look in the Telegraph on Sunday and I hope it goes without saying that I hope the review will bring you some answers. Wishing you peace in your grief and success in your endeavours.

Andy

[thehusband in reply to HerThing]

Cheers Andy.....hope you are doing OK.

[thehusband]

A bit about the phso is in it but not the piece about Christina, not sure why.

[TinaB1 in reply to thehusband]

I read about a previous case dealt with by the PHSO in a previous edition and the piece wasn't complimentary about the service. I hope things have changed now and that you get a proper review with all of the facts taken into account. This must be very difficult a situation for you.

[thehusband in reply to TinaB1]

Thanks .....It is very frustrating, the care my wife had at the Marsden was brilliant, it was the care by our local hospital/Onc which was the problem. As for the PHSO what i found was even when i supported my complaint with emails (to and from our Onc) they either ignored this or suggested there could be something else which supported the Onc. Of course there wasnt because had there been the Onc would have said it herself.....

I dont actually want the Onc to get 'into trouble', i just want her to acknowledge that she failed my wife. But more than likely that is not going to happen.

Oh well - onward and upward.

[TinaB1 in reply to thehusband]

I can very much understand that you want answers. I don't think it's for the PHSO to second guess facts about treatment decisions. If there is information in justification, why haven't they asked for it from the oncologist and conveyed it to you? By just saying what they have, they appear to be supporting some kind of hypothesis without evidence, adding another layer of frustration. How long will it be before they send you what they think in its full version? And does this prohibit you from following other routes in the meantime? Personally, I don't think doctors should be able to withhold information without being able to justify that decision in retrospect and nor does it seem they should be able to as shown in Vicky's case law example.

[thehusband in reply to TinaB1]

The PHSO made so many assumptions that they didnt need to make because i supported all my complaint with documented evidence. However, in 'their world' they seem to want to assume anything that may support the Doctor.

I have had a full decision which i have appealed/asked for a review, simply because the decision ignored many facts, they made assumptions that didnt need to be made because facts were before them, i should hear about the review decision within a few weeks now. But i think they only overturn about 1% of cases....so i wont expect much.

For me i just find it so bad that an Onc can decide not to reveal blood results, not to scan, not to refer when requested, stop treatment without seeing a patient and without actually telling the patient.....and the 'powers that be' deem this to be treatment of an acceptable standard.

i am going to keep tryiing to push here there and everywhere until someone at the very least says 'you know what, we could and should ahve done better'.

We always knew that OC would eventually take her, but an extra day let alone a possible extra few months would have been nice.

[lowtech in reply to thehusband]

Just a short update to my experience with the Ombudsman. I have now had dealings with the PHSO for 11 years in a case that has still not been resolved. They closed it anyway and refuse to speak or permit me to comment to their complaints department (which interestingly comes under Public Relations and not quality or insight!).

I even had a somewhat offensive letter from their boss when he blamed all complainants for being 'unhappy' with the prejudiced and corrupt tactics thePHSO use and have been made aware of over many years.

Nothing has changed however. Any 'resolution' which claims that your child "would probably have died anyway" (exact words) - and refuse to give any medical or other explanation for this, is dead in the water.

Do not use the PHSO or you will be on tranquilisers for years - if not for ever. The PHSO is not about learning; it's about damage limitation in failing Services.

Unfit for purpose - and they know it!

[thehusband in reply to lowtech]

Hi,,,yeah the PHSO basically said to me that ultimately your wife would have still died and what our Onc did (or didn't do) didn't really make any difference to the ultimate conclusion. That wasn't their exact words...but that's what they were saying. They said that the Onc didn't give the care that Christina should have had, but it didn't change the outcome. I told them that an extra day let alone potentially some extra weeks/months - certainly would have changed the outcome. But it all ended up going silent and I just left it because there isn't anything I can do. Terrible service from them and an absolute waste of time....unfortunately.

[vipervictoria]

Lawrence, I am so sorry about what happened to your wife. Even doctors are questioning the PHSO. There's a widespread feeling that it's not working for patients or the health service. There has recently been a supreme court decision that may be relevant - Montgomery vs Lanarkshire Health Board - which emphasises the duty of doctors to inform patients to enable the patient to make a decision.

Apart from the ombudsman, it might be worth contacting your MP, MacMillan and also the PALS service at your hospital, if you haven't done that already.

The appalling thing about situations like this, which I found out about as a result of my own treatment, when clear signs of malignancy were missed in a series of scans over 18 months, is that nobody will ever say sorry. The most you can expect is a phone call from someone with a verbal apology, but never anything in writing.

Thinking of you, Vx

[thehusband in reply to vipervictoria]

Thanks......as for the patient being involved in their treatment etc, absolutely agree. As i mentioned our Onc just decided without having seen Christina for over 2 months that Christina was now too frail for further treatment and nothing would work, didnt tell us this though, we found out 15 days later.

The PHSO response to this part of the complaint was 'the outcome would still have been the outcome'.....i.e my wife would still have died.

They then added a little snippet which said that 'if decisions are not made with the patient, then they should be'

I shall keep pushing and pushing though to see where i can take this.

[lowtech]

Can only add comment about PHSO being a totally corrupt organisation and the comment " the outcome would still have been the same "....i.e [patient] would still have died is an illustration of PHSO second guessing and pre-determining outcomes with no reliable and professional evidence taken into account. They even said NICE guidelines for best practice didn't count either. Nothing's changed as of this date. PHSO covertly lie to clear off complaints. I am very sorry that you and others have suffered in the same way.