Quality of care provided

Hi GMC

Have your wife had a needs assessment and you a carers assessment from your local authority? This is an independent assessment of what you both need. I know there are lots of people who have concerns in this area - not least down to the availability of people to actually provide the service.

<<hugs>>

Steve

GMC,

Our situation may have been a bit different from yours but looking back there was some frustration.

The main hospital was 30 miles away and therefore the initial decision was to localise things as much as possible. That said, the lead oncologist was based in another only 15 miles away. Scans were done in the one in our town. As a result, we spent a year and a bit going between three different hospitals. I found nearer the end that they did not seem to communicate between one another and that is what I found, at the time, and now, looking back, very frustrating.

The one time my wife had a telephone consultation, it resulted in the comment that it would be better if it was face-to-face. It still upsets me that she was not then made an appointment to see the consultant sooner. It may have made no difference but some other treatment may have been considered at the time.

I think there were times when she was frustrated herself as I recall a comment now from her on the lines of her feeling forgotten about at times.

And as for the GP? Shambles!

This message won't help with your own situation but you're not alone in your frustration.

WDJ

Hi GMC

We've experienced the same with our dad's cancer treatment care and ended up taking it to the patient affairs manager at the hospital he was at. Definitely think we need to be more vocal and advocate for safe, timely, quality treatment for our loved ones. In our experience, it was the overall system and management that fell down rather than the individual nurses and doctors who work really hard.

Hope things get better for you and know you are not alone in speaking out. 

x

Hi Ramen_12 

I also found that individual nurses and doctors are one the whole excellent but that the overall system and management is appalling. When my wife was in hospital she was moved between three different wards and each time was asked the same questions and nurses would note the answers on paper forms or on one or two occasions on their rubber gloves which suggests that the IT systems are inadequate of not working (I'm an IT professional BTW).

For us the real problems started after discharge from hospital to home care.

My wife, on discharge had oxygen saturation levels around 75% but an appointment for oxygen therapy assessment was made for at least a month later, I bought an oxygen concentrator privately to fill that gap. On admission to hospital she already had limited mobility being only able to walk about 20 metres and unable to climb stairs, on discharge nobody visited the house or even asked questions to assess the suitability, as it happened I'd already bought a stairlift but that was unknown to anyone in NHS or social care.

When it came to care at home the lack of co-ordination and resources became obvious, GPs saying that the overall care plan was the responsibility of the community palliative care team and vice-versa.

The palliative care nursing team failed to return calls on several occasions. We did have one excellent palliative care nurse assigned to us, he would phone regularly to get updates, visited every two weeks and acted as the single point of contact with all other services. Unfortunately he only worked part time two days per week and unfortunately all his service ended when he was re-assigned to a different area, we were given no notice of his re-assignment or the identity of the key-worker replacing him.

When my wife was at home we were assigned carers, provided by a private company, for one hour per day. They were so limited in what they were able to do that they were effectively useless.

One hour care per day at a fixed time wasn't appropriate for my wife and I wanted to extend that time by paying privately for additional care, I tried to contact the service responsible for the allocation and finance for care packages and was given two phone numbers both of which were unobtainable, internet research finally got me to the actual CHC number but then I was directed through four different services before finally being given another phone number also unobtainable. It goes on and on.

My wife is now in a local hospice and the care there is excellent.

My wife died in Hospice 24th June. I'll spend some time researching whether she could have benefited from treatments not approved in UK and I don't know the answer to that. I will be publishing an article detailing the systemic failures of our health service which are down to badly designed IT systems and the fragmentation of the service.

GMC,I

f you wish, I am more than willing to provide you with information about our experience if it helps with your research. Let me know and I will ascertain how to contact each other privately.

WDJ.

WDJ

That would be helpful. thank you