Has anyone had helpful responses from hospital PALS teams?

[RoseFlowerDew]

Hi

I have just had a very late and very unhelpful response from a PALS team and I was wondering if anyone has had useful help through contact with hospital PALS teams?

Long story short, I made comments to PALS in June and they were subsequently turned into a formal complaint by their own initiative. The hospital staff have made mistakes, it was admitted in the response but no apology. No action.

Worse, over the year my health has had periods of deterioration and now it looks like I have falling SPO2 (commented on by nurse), high blood pressure and heart rate at times (again commented on by a different nurse and in different clinic) and perhaps even have permanent joint changes and left without care. My GP is pushing hard for a replacement rheumatologist and I may yet still see a different cardiologist because whatever is up is affecting so many different aspects of my health and the doctors don’t understand what is happening and on two of occasions have discharge me without answers or suggestions.

I am alarmed because I have now had chest pain for around 18 months, breathlessness, slightly productive cough, visible joint changes, rashes and all the doctors do is say is well your blood tests look normal except for a slightly raised complement C3 and C4 and APS antibodies as well as Pr3 Anca but then do nothing. I do have comments on changes seen in cat and chest x rays but they were buried in the details and consequently not acted on. I come home and struggle for a few months, go back with the hope of help and still nothing happens. Up until I had visible symptoms strong overtones were made that I was imagining things.

I am at a loss. The hospital keeps pushing back that everything is normal even when nurses comment that things are unusual and I have visible changes.

[katieoxo60]

I am making time to answer you as just lately I have found the same when asked to provide feed back it is turned into a formal complaint by Pals. Sadly many of my experiences are not good like yourself and feel that to spite evidence we are fobbed off when things go wrong even minorly so. Resulting in delays to our treatment or maybe on occassions no treatment when early treatment might have changed the outcome. While the NHS system continues to plod on same old same old in my eyes good as it may be for some. THings have improved if you have certain illnesses but the diagnostic process still seems to be hit or miss especially if you have other ongoing chronic issue and the doctor still rules. I wish you every success in your journey through the system but you will end up like many left in limbo unless you fit into the latest funded illness project. or waiting with no info as you seem to be right now. Best wishes

[anng18]

Pals is the formal complaint route of the NHS. Once a complaint is instigated, they are supposed to set up a meeting with you and the dr.s/nurses that were involved in your inferior care. That is when you should be given an explanation or an apology regarding your treatment and also be given the opportunity of maybe seeing a specialist etc., to sort out some of your problems. The case could end there, or if you feel that compensation is due, the case is passed over to the NHS compensation offices. Medical negligence is very difficult to prove without access to all your medical records from both the hospital and Dr. It is also based on the consequences of negligent treatment. It's very harsh, as even if you were treated badly, but suffered no long term ill effects, you would not be entitled to anything.

I brought a case on behalf of my husband who had been in an accident. It was easier to prove, as they had not diagnosed all his injuries in A & E. Clavicle bone broken in 3 places, 4 broken ribs, punctured lung etc. In fact they had wanted to send him home on a bus!

I hope this helps, as your situation is a very frustrating one to be in. My mother was not treated very well either, so I am very sympathetic to you.

[magsclark12]

I went to PALS a few years ago after several weeks in hospital with severe illness. I'd had issues with one doctor and also moved wards and being forgotten. They were extremely helpful and gave me counselling too. I had meetings with the matron of ICU and a consultant, also an apology from the one doctor and explanations which helped. This was in Warrington and I felt it was a positive experience and very helpful.

[RoseFlowerDew]

Thank you for your all your replies. Well I didn’t have formal complaint in mind when I made comments to PALS but they decided it was warranted. Only I’ve been in difficulties with my health over a long time and now waiting 2 years for a diagnosis. It’s alarming that 146/99 blood pressure regularly and a times dropping SPO2 with chronic chest pain and many other issues have not resulted in getting more consideration. I guess the PALS whilst protecting the hospital has left me feeling that they will be happy to say everything is ‘normal’ at the expense of my health and self esteem. Astonishing in the face of visible symptoms and long list of stats.

Is there a way through uncertainty while waiting for the system to help?

[Izb1]

I went through pals when my Mum was in hospital and had been sadly neglected, it didnt amount to much but made me feel better and I had a letter of apology. PALS are supposed to be nin biaws and independant but always seem to be on the side of the hospital so dont think they are. If you are worried about your blood pressure go back to your gp and ask their advice. My sinus op was cancelled due to my blood pressure being 178/94 with nothing done until they wrote to my gp advising of a fast resting heart rate on ecg and it was my gp who sorted it out. I think we have to chase things up nowadays as everything just gets left, sad state of affairs . Hope you get things sorted x

[micox]

I've had recent problems with PALS too. However, I think the most important issue here is that PALS is employed by the particular NHS Hospital Trust. PALS was set up as a body independent of the particular Trust to 'advise and liaise' with service users and their complaints. How on earth they can independently liaise about complaints aimed at their own employer I really don't know!

[RoseFlowerDew]

Well as it turns out despite ongoing issues as well as ongoing chest pain and no clear understanding of what is causing it I was discharged today. On the assumption I am ‘imagining it’ because the xray didn’t show anything. This is in-spite several nurses being worried and commenting. It is also inspite of being told I would be referred to other hospital specialists which I now wish I had recorded (never occurred to me that I would have to prove what was said).