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Continuing saga; complaint over Neil's care !

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User
Posted 10 May 2015 at 20:35

I dont quite know how to word this I am so livid ! Those of you following my story will know that in Jan 2015, Neil's daughter and I met with various representative of the local urology dept and hospital managers over our serious complaint about his atrocious end of life care.

We felt we had really accomplished something, the hospital was deemed negligent and we settled back to get the meeting minutes and evidence of the action plan the department was supposedly going to have to implement.

Four months later and no sign of the minutes.. Neil's daughter continually chased up the Safeguarding people to be contacted recently to be told.... the guy who took the minutes failed to record anything meaningfully. He was told to sort this out and then quit his job.

The Trust management asked who was at the meeting and who had a list of action points and they refused, saying it was the responsibility of the Safeguarding people.

The Chair of the meeting has pieced together the minutes and asked Beccy and I to add to or amend any inaccuracies.

 

I am worn out with all this but at this stage, I feel we have to consider wider media involvement or indeed, legal involvement as this whole thing has been one lot of incompetence to another.

Has anyone on the forum any suggestions as to how or where to proceed with this. It is bad enough coping with the grief I feel daily over Neil's death. I doubt I will ever trust the NHS, at least the local set up, ever again .

 

Fiona.

User
Posted 02 Dec 2015 at 16:04

Well, today I finally got an apology from the CEO of North Bristol Trust, plus associated paperwork regarding Neil. They finally acknowledged how poor his end of life care was and have had to instigate a host of measures to improve care and communication for men under the care of urology who have complex, life limiting diseases.

Ironically, I got the final response through having contacted my MP, whose case worker's involvement seemed to quickly resolve matters whereas Neil's daughter and I had, once again, not heard from the Trust in months. The latter had apparantly sent the apology to Neil's daughter earlier this month but as she had moved ( pretty sure she notified them ! ), the package was returned. Had they sent me a copy....no ! It gives me little faith in complaints processes where grieving relatives are ignored and agencies like the CQC and Safeguarding appear to be treated with contempt. I think NBT have got off lightly, Neil's daughter and I could have easily gone down the media or legal route as we came close to doing.

 Neil would have been able to retire in Jan 2016 if he were still alive, he would have loved to have stopped working. His adoptive father died a few days ago, it would have been lovely to have seem him inherit his Dad's estate, Neil had always been very dutiful in helping his Dad despite no emotional closeness. I guess all this is of no consolation though.

A few week's back, I was very touched to be asked to join the committee of 'Prospect', Bristol and District Prostate Cancer Support Group, a great bunch of men who do brilliant work behind the scenes supporting men, their families and advocating for services. Funny where life takes you, never imagined my life would come to be so dominated by all this.

Fiona.

User
Posted 13 May 2015 at 15:37

Crikey, Titanic,

 

What a story ! I have friends in a similar position to the one you describe !

Thanks everyone for offers of advice and help ! I took to the computer a day ago and composed an assertive but considered letter to the Safeguarding chair ! As well as adding my amendments to the minutes, I have insisted the action points agreed on in the January meeting be followed through, assuming that safe and good care is in the interest of the hospital to provide. If this doesnt happen, I will at least approach the media, too many incidents of neglect in health and social services are identified then conveniently forgotten, the news is invariably full of them !

Onwards and upwards as the saying goes !

 

Fiona.

User
Posted 02 Dec 2015 at 17:11

Well horrible as the whole situation was at least something good came of it, but God, how frustrated you and Neil's daughter must have been

The gross inefficiency alone is enough to cause steam from the ears,let alone the apparent lack of compassionate care.

Well done both of you for persevering.

We can't control the winds - but we can adjust our sails
User
Posted 02 Dec 2015 at 20:02

Let's hope this has led to real improvements that will make things better for men. Well done for following through!

Barry
User
Posted 02 Dec 2015 at 22:37
Fiona

I'm so glad you got a resolution. Well done to you and Neil's daughter for your perseverance, the effect of your hard fought apology and review of all the actions (or inactions) of those involved in Neil's care will be of immense help to all those in future who are in need of end of life care. I salute you, you were so wonderful, you could have taken the "easy" route of legal or media but you wanted real change and you made it happen.

Nothing can change what happened to Neil, but your actions have made that much less likely in future. I'm proud to know you.

Love and respect

Allison xxxx

User
Posted 02 Dec 2015 at 23:13

A significant victory, well done. More importantly, this should help so many others.

Well done for your perseverance.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 03 Dec 2015 at 21:16
Fiona

good to read your news both you and Niels daughter never gave up.

This will help so many men that they will never have to go through what you and Niel suffered.

Proud of you wish I had posted Eric's lack of care or should I say he had none.

Carol x

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User
Posted 10 May 2015 at 22:43

Fiona

Contact your MP, the local rag, the nationals, your Council representative, Citizens Advice, your priest if you are religious - scream it from the rooftops. Write letters to any organisation that pushes local info through your door. Contact the Nationals - someone, somewhere with some clout will pick up on your complaints and will take them further.

Although you are not looking for financial compensation, is there a firm of lawyers who would sue with no win no fee?

Hope this helps and you get the recognition of the atrocious care Neil received.

Paul

Stay Calm And Carry On.
User
Posted 10 May 2015 at 22:56
Fiona

I know this has been very traumatic for you and Neil's daughter Beccy.You also know that my experience with the NHS and more specifically the hospice and Mick's care could not have been further removed than yours.

I know at one point it looked as though you would get a written apology and the promise of action within the hospital to prevent the unnecessary pain happening to anyone else. If that has not happened for whatever reason then you should be able to at least air your grievances and have them answered formally.

I guess my question for you is do you personally want to go down this route or are you doing it just for Beccy or any other reason ? I say that because taking any formal action will be expensive and you may not get answers that you want to hear.

If you really do still feel so bad about Neil's end of life care then there are 2 things I can suggest you do.

1) by all means try and get media involvement to highlight the inadequacies of the current system in your health service region.

2) Get involved with me and others to try and ensure that palliative care through end of life is better documented with more help and support.

xx

Mo

Edited by member 10 May 2015 at 22:57  | Reason: Not specified

User
Posted 10 May 2015 at 23:38

Concerned that so many first names are being used here, since our posts are now googleable by any Tom, Dick or Harry and there is potential for legal action at some point in the future.

However, I think that N was failed over and over again and I often wanted to weep for you Zarissa. In terms of your question about next steps, have you spoken to your hospital PALS team? They may be able to help.

Edited by member 10 May 2015 at 23:40  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 May 2015 at 00:40
Oh Fiona

have been thinking what to reply to you since I read your post.

I have now changed origonal reply after I read it back .I realised that my post was more about me than your questions all I can say is follow your heart on this one not your head you always put up a good fight for Niel and your love for him was obvious.Take care of yourself and as always you will find the right thing to do for some peace of mind.

Carol x

Edited by member 12 May 2015 at 00:55  | Reason: Not specified

User
Posted 11 May 2015 at 07:38
Hi Fiona

Some good advice as always.

Reading your posts it seems clear what you are trying to achieve ie a recognition by the NHS of the appalling care your OH received or didn't as the case may be and to ensure practice is significantly improved so that this does not happen again.

If the above is correct I would be tempted to take up the Chairpersons offer if you can recall the salient points. I would also ask for timescales for actions and names of those who are going to take lead responsibility for any actions. I would also ask for details of how any actions will be reviewed. I would then point out that if you do not get a clear action plan in a reasonable timescale that you will take it further ie PALS

Bri

User
Posted 11 May 2015 at 08:25

Thanks so much everyone for your helpful and informative replies. I have read the 'minutes' cobbled together by the chair woman and I will be asking that the action plans agreed are actually followed through. I cant help feeling the local Trust would happily side step all this which is what most inflames me, the sheer lack of accountability from anyone. Trouble is, I am at heart a fighter, sometimes own worse enemy but I can't let these things go !

You are right about the pressure, part of me whants to let it go, but I am retired, no commitments so do have the time to chase these things up. I will check with Neil's daughter what she wants to do. I think she , too, wishes she could have done more but none of this excuses all the incompetence. I think of our local prostate support group and the hope the members there might get better treatment from our efforts !

We had cried off going to the media as we felt the meeting in January had been productive hence the sense of feeling so let down !

I think I will have a day dog walking and comfort shopping ! Regards to you all. I start attending a bereavement group at the local Hospice in June, they are great, they really know what they are doing and the support is excellent.

 

Fiona. x

User
Posted 11 May 2015 at 23:00
Hi Fiona

Honestly what a bunch! I'll make no further comment on that as its all been said by others here.

It is very hard to let go, especially when there is a genuine reason for persuing this and a commitment to prevent this happening again. I think, don't wear yourself out, you've done everything you can so far, so the minutes, follow up and fingers crossed they will come through for you. I totally agree that the lack of accountability is shocking in the NHS, I understand it in some ways but find it appalling and frustrating in equal measure.

I just wanted to send my love and a hug really.

Lots of love

Allison xxx

User
Posted 12 May 2015 at 06:35

Thinking of you and Beccy Zarissa. It is so frustrating for both of you.

Not really into taking the legal route (I worked in a solicitor's office for a number of years) BUT, if it was no win, no fee, AND they feel you have a case then they would do a lot of the work for you in sorting out who to chase etc.

It's a long road to go down however and unless it's the no win route then believe me it will work out very expensive. Even applying a staple to a document costs money!

Best wishes in what road the pair of you decide on.
Probably no good pointing out how much all of this will drain you since, if you are a fighter and you do nothing, the injustice to your other half will eat away at you anyway.

Good luck
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 12 May 2015 at 16:43

Fiona, for what its worth....

my father in law aged 86 was in hospital and fell out of bed at 06:00 one morning (they had failed to put up the bars ), hit his head and need 10 stitches, they kept him in bed all day he was eventully stitched up at around 17:00 no one informed us of this,

we had been there everyday for 3 weeks and took that day off, my daughter paid him a visit at 18:00 and later that evening told us, what had happened, we were furious, it was a negative exercise raising a complaint, no one at all was interested or gave a damn, we wrote to the hospital to raise our concern and complain...still awaiting a reply

contacted a no win no fee lawyer, we werent interested in the money, we believed that his care and treatment was unacceptabe
we were told it would take a minimum of two years before the case would be delt with, and to be honest they werent that interested either,
he has since passed away and we didnt have the inclination to carry on, it makes my blood boil, if only we had to pay cash at the end of treatment maybe things would be different,

good luck I feel your going to need it.

User
Posted 13 May 2015 at 15:37

Crikey, Titanic,

 

What a story ! I have friends in a similar position to the one you describe !

Thanks everyone for offers of advice and help ! I took to the computer a day ago and composed an assertive but considered letter to the Safeguarding chair ! As well as adding my amendments to the minutes, I have insisted the action points agreed on in the January meeting be followed through, assuming that safe and good care is in the interest of the hospital to provide. If this doesnt happen, I will at least approach the media, too many incidents of neglect in health and social services are identified then conveniently forgotten, the news is invariably full of them !

Onwards and upwards as the saying goes !

 

Fiona.

User
Posted 13 May 2015 at 20:27
Good luck Fiona

your determination is commendable I just hope you get justice and proper answers on what went wrong, an admission of neglect and an action plan to show how the local health authority are going to address those shortcomings.

I know you are very organised so am assuming you kept detailed notes on all the events during Neil's battle. There are people here like me who really want you to succeed with this now that you are certain you want to commit to this route so if you need any help or want to run ideas past somebody then please let me know,

Best wishes

xx

Mo

User
Posted 02 Dec 2015 at 16:04

Well, today I finally got an apology from the CEO of North Bristol Trust, plus associated paperwork regarding Neil. They finally acknowledged how poor his end of life care was and have had to instigate a host of measures to improve care and communication for men under the care of urology who have complex, life limiting diseases.

Ironically, I got the final response through having contacted my MP, whose case worker's involvement seemed to quickly resolve matters whereas Neil's daughter and I had, once again, not heard from the Trust in months. The latter had apparantly sent the apology to Neil's daughter earlier this month but as she had moved ( pretty sure she notified them ! ), the package was returned. Had they sent me a copy....no ! It gives me little faith in complaints processes where grieving relatives are ignored and agencies like the CQC and Safeguarding appear to be treated with contempt. I think NBT have got off lightly, Neil's daughter and I could have easily gone down the media or legal route as we came close to doing.

 Neil would have been able to retire in Jan 2016 if he were still alive, he would have loved to have stopped working. His adoptive father died a few days ago, it would have been lovely to have seem him inherit his Dad's estate, Neil had always been very dutiful in helping his Dad despite no emotional closeness. I guess all this is of no consolation though.

A few week's back, I was very touched to be asked to join the committee of 'Prospect', Bristol and District Prostate Cancer Support Group, a great bunch of men who do brilliant work behind the scenes supporting men, their families and advocating for services. Funny where life takes you, never imagined my life would come to be so dominated by all this.

Fiona.

User
Posted 02 Dec 2015 at 17:11

Well horrible as the whole situation was at least something good came of it, but God, how frustrated you and Neil's daughter must have been

The gross inefficiency alone is enough to cause steam from the ears,let alone the apparent lack of compassionate care.

Well done both of you for persevering.

We can't control the winds - but we can adjust our sails
User
Posted 02 Dec 2015 at 20:02

Let's hope this has led to real improvements that will make things better for men. Well done for following through!

Barry
User
Posted 02 Dec 2015 at 22:37
Fiona

I'm so glad you got a resolution. Well done to you and Neil's daughter for your perseverance, the effect of your hard fought apology and review of all the actions (or inactions) of those involved in Neil's care will be of immense help to all those in future who are in need of end of life care. I salute you, you were so wonderful, you could have taken the "easy" route of legal or media but you wanted real change and you made it happen.

Nothing can change what happened to Neil, but your actions have made that much less likely in future. I'm proud to know you.

Love and respect

Allison xxxx

User
Posted 02 Dec 2015 at 23:13

A significant victory, well done. More importantly, this should help so many others.

Well done for your perseverance.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 03 Dec 2015 at 00:17

Good to see this Zarissa - no one should have to go through what you and Neil experienced.

I hope you are doing okay?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Dec 2015 at 15:24
Fiona

Thank goodness at last.

I am going to be working with Any from PCUK over the coming months on some things to do with end of life care. I hope you will also get involved, our experiences were polar opposites. It is such a poorly understood or handled situation for so many so something has to be done.

Well done you and Neil's daughter for persevering.

All the very best

Xx

Mo

User
Posted 03 Dec 2015 at 19:04

Hi Mo,

 

I'd be happy to get involved, gives me a role and if it helps others I'm all for it !

Lyn, I am struggling on, no point hiding that I feel very bad at times, the grief just gets the better of me, not helped by my personality type, I cry easily and find change hard to cope with, always have. I am amazed at the amount of things I have accomplished over the last year but just hope sometime I will find some type of equilibrium. My 'comfort eating' side has currently re emerged, though I am appreciative to all the friends who invite me out for meals, I can blame them for it ! My thoughts, as always are with all our men and their partners facing an uncertain future,

 

Fiona. x

User
Posted 03 Dec 2015 at 21:16
Fiona

good to read your news both you and Niels daughter never gave up.

This will help so many men that they will never have to go through what you and Niel suffered.

Proud of you wish I had posted Eric's lack of care or should I say he had none.

Carol x

 
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