Want to compain about treatment without offending anyone. Advice please

[redsmiley]

Patient and Advice Liason service PALS sorry, realised that i didnt write this in early post x

[redsmiley]

Please use the PALs service, there is one in every NHS. good luck

[jillybee]

just seem email when you reply, hence this little messge... take care

[jillybee]

Had poor treatment in hospital, some years ago, following a reconstruction, as first one had capsulated. The staff were, in a word, sloppy, and as a staff nurse myself in the hospital, could see how poor the care was. So, what I did, was write to PALS, and bullet point all concerns. I did d this, and at same time did praise some aspects of my care...you must complain,even if this is to prevent it happening again. In my case, my letter went to ward manager, and reply was not satisfactory, according to PALS, so they took it further. Outcome was brilliant, and the surgeon actually stopped using that particular ward.Let us know how you do......not easy to do, as you are feeling wobbly, probably.

[Chico]

Well I put in a complaint as I was misdiagnosed and given unnecessary treatment over a period of 7 months, Pals was a joke and clearly on the hospital side! I just got the standard letter saying that new practices are now in place so it won't happen again, I asked for all my notes to cross check them and was surprised as to what was in them, a liver scan showing lesions was not followed up and a heart scan was missed the oncologist said please can you schedule this as it looks like they have been missed, yer by 4months, thank god the lesions were benign and my heart scans were not showing to much of a drop, this all happened in feb this year, last Thursday I had an appointment with my surgeon as he is looking after me as Don't wish to be under the oncologist and he was definitely hostile, I just despair with it all, I feel I don't have anybody on my side, so is it worth complaining?

[grumpy]

In this area, we get superb treatment and respect. All letters are copied to GP and patient, clinic will take phone calls anytime and phone back, we can ask for appts to talk things through at any time, and GPS work well with clinic.

Even so there can be glitches - I was given some inaccurate information about recon which took 2 years to sort out. The factors that made this easier to handle were

1. I had made full notes immediately after every appt

2. I gave my GP copies of my letters to the clinic to scan in for my records

3. I asked my GP to read my letters before I posted them to make sure I had not been offensive in any way

I am now nearly 4 years on, and know the support from the clinic is still there if needed.

So why are clinics/hospitals so different???? I think it may be due to scale, smaller hospitals/dedicated clinics seem to do a better more personal job than ward's in huge hospitals. It seems the problems are NOT the actual care, rather the management standards. Just a thought.

Grumpy

[angiepops]

hi

ive had a few problems too

gp mis diagnosed - the fatty lump was actually worth looking at - i then had mx and anc. i cant help thinking that if i had gone to the clinic that 8 months earlier i might not have had 12 nodes affected. she's very nice to me now though.

when i was getting ultrasound, the nurse pointed out all the cancer! before anyone else had spoken to me about it! shock isnt the word. then the surgeon broke the news to me again, then the bc nurse rang me and told me again!!!

the bc nurse gave me no warning for op - i had 30 seconds to decide delayed or immediate recon. the bc nurse never answered one message left either, or told anyone else anything when she was away.

they lost my notes before pre op, no one knew what op i was having - including me!

they lost my notes twice in oncology - but the nurse said this was ok, they would just turn up in someone elses notes eventually!!

now getting rads, they did my discharge appointment last week with 10 rads to go? dont know how that works, and theres no follw on appointment, just a 1 year examination by someone but they dont know who.

angry isnt the word!

angie xx

[Lemongrove]

This sounds like structural disorganistion to me, rather than a one off. It appears that there isn't one part of the organisation that is capable of communicating with the other, or with you. Do you think a polite letter is going to solve this ? You will simply get a reputation as a complainer. Just go to another Hospital. The NHS Constitution gives you the right to be treated anywhere you like. It's true that the Hospital you choose is not obliged to accept you, but most do, because they get paid for bums on seats. So post on here to find out where the best hospital is in your area, and tell your GP you have no confidence in your existing Hospital, and want to be referred to X Hospital.

[Guest user]

I made an official complaint following my first cancer treatment in 1991. Got fobbed off, with their first letter claiming everything down to a misunderstanding. I wrote back, asking whether it might possibly be that it was not me but the surgeon who might have been responsible for at least part of this. Got a reply that it was my word against his (= forget it). I decided to leave things were they were, but I know it had an effect. When my neighbour had BC and mentioned me, the BCN said "Yes, but she was a lot younger than you...." and I am aware that a lot of the things I complained about have now changed. (One being that when I left hospital after my biopsy, they said they would be in touch if it were bad news, otherwise to wait for my six-week appointment. Then, I got a letter on Saturday morning saying to go back to hospital the next week. Still, I wasn't worried, as they had mistakenly given my GP the all-clear.) I only wanted to stop them doing to others what they had done to me, so my complaint was successful and I was, eventually, happy. Still, it is a shame that they will never own up to having made a mistake. I'm sure far fewer people would actually sue if hospitals were more prepared to put their hands up and say "Sorry. How can we prevent this from happening again?"

[rosebud50]

Thank you to everyone for sharing. I will try and be diplomatic at next meeting.

it is a shame they cannit label my file with a red warning label !

[Cressida]

Hi,

I have experienced the complaints procedure from both sides, having worked in the NHS for many years and having made complaints about relatives' care too. I am also working my way up to making a complaint about my recent shockingly poor hospital inpatient care.

You need to think about what you want to gain from the complaint. Do you want a formal investigation, regardless of the result? Do you want to be listened to? Do you want an apology? Are you hoping to change the system so that noone has to experience what you did?

The NHS is a massive bureaucratic organisation that does not change quickly or easily. Like a massive supertanker it is not going to turn around because a small boat is waving at it. Even if the small boat has right of way. In my experience the formal written complaint proceedure rarley leaves the complainant feeling satisfied as the investigation will always be defensive and will aim to avoid giving the complainant grounds to sue for money. You may well end up with a qualified apology, but a letter that basically says that no-one really did anything properly wrong and you can't prove otherwise. This can feel like being mistreated all over again. There can be good results from formal complaints regarding how staff behave in future (as they are often decent people who are mortified by the complaint and investigation and do try not to repeat the behaviour) but you will not know about it. This is the reason I intend my complaint to be the formal written type, but I do not expect to see the results for myself. I have very low expectations of what they will own up to in a letter, but I know things will be going on behind the scenes.

If you need to feel listened to and understood you may prefer a more informal process - ask PALS to support you in meeting with the relevant people and talking to them. They may actually be quite open and apologetic in an informal meeting. Stress you want it to be informal, so that people don't feel defensive.

You might also want to know that, although staff feel defensive and upset by complaints, they do not, in my experience, take it out on the complainant. If anything, you actually get better treatment as they make sure to cross t's and dot i's.

I wish you well, whatever route you choose to take, sorry for the long rambling post,

Cress, xxx

[Bethy]

Rosebud 50
have pm you!

[Panacea]

Hello Rosebud
How maddening to have all those errors and inconsistencies to deal with, at a time when we're relying on the experts to get it right for us. I'm really impressed with how clearly you've set out the problems.
You've mentioned some of the good care, and I think that is worth including too - maybe it shouldn't be this way but my experience is that it gets a better hearing! I'd suggest grouping the specific things that have gone wrong under some themes, and saying what you'd like in terms of explanation / response, and any suggestions you'd make to improve things.
I guess some of that depends on whether you are doing it as a formal complaint or not. I've only had one experience of this on behalf of an elderly relative via the hospital complaint manager who was very helpful, but the emphasis was all on the compaints process itself rather than examining what went wrong and trying to improve it and I wish now I had gone a different route. I think if I had approached one of the clinic staff who I had built up a rapport with it would have been better in that instance.
Perhaps PALS could advise too?
Since attending the breast clinic I've mentioned a couple of things to my BCN. I still have to steel myself to do it, and she has been excellent so its been pretty minor things so far, so I really admire you for speaking up.

Re the communication btw GP and hospital - this seems to be a bit of a weak link for a lot of people and one of my concerns as I head for chemo. I havent' a clue who is responsible for what - prescribing, dealing with side effects etc and I think I've seen comments on other threads about this too. Aside from the variation in our individual GPs, perhaps this is a general issue that needs tackling!

Good luck with it!

Deborah

[Guest user]

Hi Rosebud......im so sorry to hear of your concerns re your treatment and the communication of plans, appointments etc. I think you have 2 initial choices....either to express your concerns informally and say you would like to meet with your consutant to discuss them.....and ask to be copied in to any letter as a consequence of that meeting.....or to make a formal complaint...of course if you are not happy with the responses to your informal approaches you can always complain formally after.
To tell you of my own experience. When I was first diagnosed with secondaries I had a collapsed vertebrae in contact with spinal cord. I was seen by the consultant on call ( who was extremely nervous) who said there were 2 possible forms of treatment but only went on to discuss emergency radiotherapy and told me I didnt want surgery. I asked her to discuss it with me further and perhaps get a spinal surgeon to discuss with me but she brushed me off and arranged emergency radiotherapy later that afternoon.
When I went back to read NICE guidelines I became aware surgery was recommended for cord compression....although mine was only incipient card compression.
I contacted BCN to discuss my concerns ..she was very experienced and arranged for my consultant to see me within next few days. My complaint wasnt particularly about the actual treatment....but about the inadequate discussion about options. Indeed as he told me he believed treatment was the most appropriate and that they had had reacent bad experiences of surgery....but my concerns were documented in a letter....he said usually pts do not want to discuss options at the time of great stress!!!
Since then I usually see him if he is available and I think all options are discussed although I of course "consult" him and follow his advice!...My collapsed vertebrae has remained stable for just over 2 years and i am still essentially asymptomatic so I guess the treatment was correct!.....I do however have easy access to a spinal surgeon now so I guess any deterioration could now bw discussed with both specialists.......so some tangible result!
Not sure how much this helps...but it is possible to have a full and frank civil discussion and to mantain relationships with your treating team! Pamx

[rosebud50]

bump

[rosebud50]

Hi
Looking for advice....
I have just finished treatment following surgery, chemo and am now on Tamoxifen. Whilst a lot of my care has been superb with few delays, there have been areas of problems and I really would like to be able to discuss them with someone. I feel my voice is not being heard.
A lot of my treatment happened in August so I ended up seeing all sorts of different BCN, with no consistency and things forgotten.
After SNB, they had to apologise that they had only just re-evaluated my scan and I would have to have a MX. I was given the choice of whether to continue chemo first then surgery or vice versa.
Saw oncologist who seemed unaware of my choice and launched into 20 mins of why that choice was bad. When got word in edge ways to say that surgery was not possible then, she had to back track but damage was done.
Switched to surgery first but PS not available so used another surgeon for simple MX and asked for delayed recon. After surgery no call from nurse. When I called to have dressing changed was told hospital information wrong and they did not do it, go to GP. GP nurse surprised and said that BCN centre usually sees patients. Was not even asked how I was. At follow up appointment, no mention of prostethis and had to ask. No mention of follow up appointments. In fact they seemed more concerned to get rid of me.
I have managed to get through chemo and see oncologist for follow up. She started talking about a pink form. I look blank and comment that I wanted to ask her about follow up scans. Turns out I should have had this information before.
BCN nurse decides to give me an appointment with PS and books me in with someone I have never seen and not the surgeon I have been under. Ring up and she is on holiday ( She probably needs it with me as a patient.) Appointments secretary swtiches me to correct PS.
To top it all, my GP prescribes tamoxifen and tells me I have to "get on with it" when I worry about hot flushes. Get to a crisis point with fatigue and cannot cope. Talk to another GP who says the sleeping tablets I am on will cause hot flushes, prescribes different. Tells me to get a herbal remedy that is fine to use. ( Oncologist has said not to use herbal remedies). Go to buy it and check with pharmacist. The packets says not to be used by people with my diagnosis!!!!!!!!
Not to mention, two appointment letters going missing in the post and one arriving at 12:00 for a 13:30 appointment. I only attended because I kept ringing to find out when they were.
Apologies for the long post. I now feel that I want to express my concern and anxiety.
+ What else has been missed? I am not trained in breast care so do not necessarily know what to ask. I keep having to think back over every appointment and remember tiny snippets of information that have not been followed up.
+ When my BCN is away, could her colleagues please fill in fully for her. Do they not have check lists for each appointment?
+ Better information for coping with the side effects of Tamoxifen. ( We do not have to cope there is medication.) The BCC helpline nurse was very good and the only person to spend time talking through the issues I am facing.

As a patient, how can I get my voice across without offending the people I need to treat me?
I feel I have a stake in my treatment and also a stake in the NHS as a tax payer. A business would be interested in its customer experience and looking to improve and resolve issues. Why not the NHS?
Thank you for reading!!!