I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Some positive results from end of life care complaint !

User
Posted 20 Jul 2015 at 14:45

For those of you who dont know my story, my beloved partner died last September. His daughter and I submitted a serious complaint about Neil's end of life care in hospital. In Jan 2015, the hospital was found to be neglectful and have subsequently been required to make changes to improve care for other patients though I gather from the Safeguarding people, the Trust has not always been very willing to engage with them, which , of itself is pretty shocking !


 Neil's daughter and I had a further meeting with Trust representatives, medical, nursing and management personnel, recently, to chase up what they had undertaken from our initial action plan.


Here's what we have achieved so far :


One of the leading urologists has taken on a role regarding improved end of life care in the department.


There is now a protocol for all staff to be aware of complex cases, mental capacity for treatment, open discussion with patients and families over the value or otherwise of continuing treatment, and safeguarding concerns. Mental Capacity Act training will be mandatory if necessary so there is clarity about how able patients are to make those decisions about continuing treatment.


There has been a recruitment drive for specialist urology nurses and the department is better staffed.


Staffing has had to be reviewed in order that there are adequate trained nurse where there is a demand for them due to patient need even if staff are transferred from other areas temporarily.


Staff have had teaching sessions from one of the Trust's palliative care consultants and Neil's case has been used to highlight failings in the system.


Medical staff rota has been changed to increase availability to patients at night.


A review of patients in the South West with compromised kidney function has indicated that having one uteric stent fitted is just as good as having two, therefore avoiding the stress of a longer procedure.


Ongoing staff training about talking to patients, families about end of life and feasibility of treatments.


Every ward now has a box with pain relief for patients requiring palliative intervention. Staff have been trained to be more confident using syringe drivers.


Flow chart on wards to help staff make decisions about end of life care, when to consult medical staff, etc.,


 


That's all I can remember to date until I get written copies !


I havn't had my apology from the Trust's Chief Executive yet so have threatened to camp outside her office. I get the feeling unless you put a very strong, assertive case over treatment concerns, they are easily swept under the carpet, luckily, Neil's daughter and I are pretty forceful characters. So, hopefully, we will get  better treatment for patients in Neil's predicament but we are not finished yet and may well have to attend further meetings but we are absolutely determined !!


Fiona.

User
Posted 20 Jul 2015 at 14:45

For those of you who dont know my story, my beloved partner died last September. His daughter and I submitted a serious complaint about Neil's end of life care in hospital. In Jan 2015, the hospital was found to be neglectful and have subsequently been required to make changes to improve care for other patients though I gather from the Safeguarding people, the Trust has not always been very willing to engage with them, which , of itself is pretty shocking !


 Neil's daughter and I had a further meeting with Trust representatives, medical, nursing and management personnel, recently, to chase up what they had undertaken from our initial action plan.


Here's what we have achieved so far :


One of the leading urologists has taken on a role regarding improved end of life care in the department.


There is now a protocol for all staff to be aware of complex cases, mental capacity for treatment, open discussion with patients and families over the value or otherwise of continuing treatment, and safeguarding concerns. Mental Capacity Act training will be mandatory if necessary so there is clarity about how able patients are to make those decisions about continuing treatment.


There has been a recruitment drive for specialist urology nurses and the department is better staffed.


Staffing has had to be reviewed in order that there are adequate trained nurse where there is a demand for them due to patient need even if staff are transferred from other areas temporarily.


Staff have had teaching sessions from one of the Trust's palliative care consultants and Neil's case has been used to highlight failings in the system.


Medical staff rota has been changed to increase availability to patients at night.


A review of patients in the South West with compromised kidney function has indicated that having one uteric stent fitted is just as good as having two, therefore avoiding the stress of a longer procedure.


Ongoing staff training about talking to patients, families about end of life and feasibility of treatments.


Every ward now has a box with pain relief for patients requiring palliative intervention. Staff have been trained to be more confident using syringe drivers.


Flow chart on wards to help staff make decisions about end of life care, when to consult medical staff, etc.,


 


That's all I can remember to date until I get written copies !


I havn't had my apology from the Trust's Chief Executive yet so have threatened to camp outside her office. I get the feeling unless you put a very strong, assertive case over treatment concerns, they are easily swept under the carpet, luckily, Neil's daughter and I are pretty forceful characters. So, hopefully, we will get  better treatment for patients in Neil's predicament but we are not finished yet and may well have to attend further meetings but we are absolutely determined !!


Fiona.

User
Posted 20 Jul 2015 at 15:29

The Girls done good, both of you!!


Well done for pursuing the failings that lead to so much distress.


You will get your apology at some stage, of course, but it will be meaningless because you are fighting for it, and you shouldn't have been in that situation.


Now that they have been found guilty of neglectful care, the apology should have been immediate.
I suppose I can understand why it isn't given immediately (bit like saying sorry after a road accident - you immediately come across as the guilty party) but there is no excuse for the continuing delay.


Mind you, I would be the same as you and Neil's daughter. I'd want to sit outside her office and make her squirm every time she had to walk past me.


It doesn't help Neil, of course, or make what happened any less real and distressing but at least by complaining and following it up you have set in motion a change of events to protect others in the same situation


Well done both of you.

Edited by member 20 Jul 2015 at 17:02  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 20 Jul 2015 at 16:52

Well done both of you.

Hopefully others will not suffer as you all did?

dave

Do all you can to help yourself, then make the best of your time. :-)
Show Most Thanked Posts
User
Posted 20 Jul 2015 at 15:29

The Girls done good, both of you!!


Well done for pursuing the failings that lead to so much distress.


You will get your apology at some stage, of course, but it will be meaningless because you are fighting for it, and you shouldn't have been in that situation.


Now that they have been found guilty of neglectful care, the apology should have been immediate.
I suppose I can understand why it isn't given immediately (bit like saying sorry after a road accident - you immediately come across as the guilty party) but there is no excuse for the continuing delay.


Mind you, I would be the same as you and Neil's daughter. I'd want to sit outside her office and make her squirm every time she had to walk past me.


It doesn't help Neil, of course, or make what happened any less real and distressing but at least by complaining and following it up you have set in motion a change of events to protect others in the same situation


Well done both of you.

Edited by member 20 Jul 2015 at 17:02  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 20 Jul 2015 at 16:52

Well done both of you.

Hopefully others will not suffer as you all did?

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 20 Jul 2015 at 18:06

I am full of admiration for the two of you.

Let's hope they are able to put everything into practice.

Paul

Stay Calm And Carry On.
User
Posted 20 Jul 2015 at 18:51
Fiona
I am so proud of what you and Neil's daughter have achieved you really have done something very amazing.

I used to cry reading all your posts on how badly Neil was treated and the horrible impact that had on you and his daughter not to mention your relationship with them both. Of course this was all going on at the same time as Mick's last months so it was brought home to me just how fortunate we had been with his care in the hospice. The time Mick spent in our local Hospital(7 weeks) and his outpatient treatment throughout his illness were pretty good, not fantastic by any means but still a country mile better than your experiences.

It just goes to show how much variance there is region to region.

You most definitely should be getting an apology albeit very belated and probably not entirely heartfelt seeing as you have upset the apple cart so to speak, but the apology will recognise wrong doing. Good on you for having the courage and tenacity to take the trust on and make them recognise their shortcomings and now do something about fixing them so the others should not have to endure what you did.

I thank you from the bottom of my heart,as Sandra said the two ladies done good, very good, extremely good.

xx
Mo

User
Posted 21 Jul 2015 at 08:47

Excellent Fiona....your determination is going to vastly improve services for so many men.

Regarding your point about the Mental Capacity Act in my experience the NHS have been very slow at properly implementing this piece of legislation.

Well done to you both

Bri

User
Posted 21 Jul 2015 at 12:36

Fiona

Yes you have all been through more than needed. I can only congratulate you all in obtaining positives from a bad situation which will hopefully assist those at the sharp end in the future.

Ray

User
Posted 21 Jul 2015 at 13:23
Hi Fiona
well done both of you.
I remeber all to well the hard times you had with Niel you were always honest and open in your post wich I admired your honesty.
You have fought for Niel allthrough his DX and still are making sure no other family are treated how you were.
There is a BUT in this pozt how are you have you been able to grieve properly this is only my experience after Eric's funeral I had a long battle with NHS it was about mum I wont go into what happened as this post is about you.What I am trying to say is we get caught up in other fights that we dont get a chance to grieve properly then it hits you when you least expect it thats what happened to us 2months ago and yet it will be 1yr tomorow. You are in my thoughts and be proud of what you have done in Niels memory.
I also remember one happy post when he gave you the ring.
Carol x
User
Posted 21 Jul 2015 at 13:35
SH.....
sorry for the spelling mistakes didn't have time to amend. well that''s my excuse.
Carol x

Edited by member 21 Jul 2015 at 13:46  | Reason: Not specified

User
Posted 21 Jul 2015 at 14:19

Thanks, Carol ! You are in my thoughts too, especially for tomorrow. Regarding grieving I don't think a day goes by when my heart isn't breaking. The complaint has meant I have had to constantly relive Neil's last night but on the other hand, the determination and feeling I just can't give up on this have kept me going.


I have had wonderful help from St Peter's Hospice Bereavement Service, a one to one counsellor, then recently I attended a marvellous Bereavement Support Group once a week for six weeks run by the Hospice. I will definately keep in touch with St Peters and support their events especially as I live nearby. Neil was never admitted but we benefited from their community team and I have found a strange sense of peace attending the Hospice for the group in fact I was up there yesterday having taken a friend to their cafe !!


I must tell our local Prostate Support Group about the complaint results to date as the changes I hope will effect a number of our members for the better.


Love Fiona xx

Edited by member 21 Jul 2015 at 14:20  | Reason: Not specified

User
Posted 21 Jul 2015 at 21:38
Fiona
That's just a fantastic outcome, you are Neil's daughter deserve a medal on behalf of all the people who will get better treatment and pain relief as a result of what you have done. I too remember well the awful circumstances of Neil's illness and his last months. I sincerely hope no one has to go through that again and the work you have done has contributed to this being eradicated. I am so proud of you both. You are amazing women.

Lots of love
Allison xxxx
User
Posted 22 Jul 2015 at 00:13

Fiona ,


Well done to you for fighting and I applaud you, End OF Life Care in this Country is despicable , I have worked in Care homes and have witnessed  first hand the terrible way that people are treated, I won't go into detail here but I do know that Neil's treatment is/was pretty much the norm. Well done to you.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Jul 2015 at 08:02

Thinking of you today Carol and wishing you a calm and peaceful day full of happier memories

We can't control the winds - but we can adjust our sails
 
Forum Jump  
©2018 Prostate Cancer UK