mum passed away on so called end of life care it was awful

fizzie

Registered User
Jul 20, 2011
2,725
0
My Mum passed away just before Christmas. She was only in hospital 3 days and the care was appalling. They said she was critical and wouldn't allow me to get a private ambulance to take her home but they didn't go into her room in the 6 hours I was away (the only time during the whole 3 days because I needed to sort out the kids). They asked on the second day (having left her freezing cold and drooling Weetabix which an incompetent support worker had been shovelling into her mouth when I slipped away to grab some sleep for a few hours) if they could put her onto end of life care as she had double pneumonia (no surprise there then) and I agreed as long as someone competent in end of life care was available to help us through. Not one of the agency night nurses knew anything about end of life care and they were asking me to make medical decisions. I asked for a doctor 5 times and was told no-one was available. In the end they gave her a dose of diamorphine large enough to kill a horse (a frail lady who weighed 8 stone and hadn't eaten for 3 days!!!). Absolutely disgraceful. My husband died 18 months ago and the hospital made some pretty awful errors and I wrote a very constructive letter but they ignored the lot. This time I am determined that the hospital needs to change the way it deals with older patients (some of the care on the ward was so unacceptable - I have seen far better care in so called third world countries) and humiliating for patients. I'm going to try to go the legal route to make them sit up but I don't know where to start. I've kept notes and I know people can't give recommendations on here but if anyone has any advice I would be really grateful. We looked after my Ma at home for 4 years and in 3 nights the hospital destroyed everything and couldn't even provide a 'good' death which is all I was asking for.
 

fizzie

Registered User
Jul 20, 2011
2,725
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Thanks Kassy. I went the PALS route previously and they were absolutely useless. I hope you have better luck and will be thinking of you, please let me know how you get on. I have made up my mind to go the legal route but just need to work out how to do it.
 
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Gigglemore

Registered User
Oct 18, 2013
526
0
British Isles
Fizzie - so sorry for your loss. It is sad enough to lose your Mum without having to bear the anger and distress at her having suffered poor care at the end of her life.

Wishing you strength in your battle to try to improve care - sadly too late for your poor Mum.

Hope you can find some peace to grieve your sad loss.
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Fizzie, I'm sorry I have no advice but just wanted to offer my condolences at the loss of your mum and say just how appalled I am to hear the circumstances of her death. Wishing you strength to do what must be done.

xx
 

annie h

Registered User
Jun 1, 2013
148
0
Hi,
I have recently got to the end of the official complaints procedure with my local NHS Trust, so can give you a little information.
- The Trust running the hospital should have an official complaints process. This is bound to be on their website somewhere, and is separate from the PALS service, although if you can't find it presumably PALS could at least tell you how to find it on the website or are likely to have a printed pamphlet.
- Make sure you set out relevant facts, rather than getting distracted by the emotion - not so easy but important if you want to be taken seriously.
- You may be offered the option of a formal meeting rather than a complete written process. What's best probably depends on the facts. In my case I elected to have a meeting which was quite daunting as it was attended by senior managers covering each of the aspects I'd complained about (A&E, ward, dementia support people etc).
When you get a written response systematically analyse it and don't accept without challenge anything that doesn't sound completely plausible.
- If you're not satisfied that they've given you the full facts insist on having access to the medical notes. They'll probably resist but you should be able to get them. And make sure you get given everything if you go down that road. At some trusts they keep the nursing records separate from the medical file because the nursing records are voluminous (includes all detailed stuff about fluids, temperature checks etc etc).
- If you're not happy with the outcome of the complaint process you can complain to the NHS ombudsman about the matter itself, and also if appropriate about how the complaint was handled. You can't do this until the complaint process is completely finished, but you must do it within a year (calculated I think from the date of the thing you're complaining about).
- If you need support in the complaints process you can identify a local free advocacy service through "Healthwatch" (further info see "Making a Complaint" on the NHS Choices website).
NB this all assumes you are in England.....

It's worth complaining. My local trust has actually introduced a couple of improvements following my complaint, which will benefit other people even though it was too late for my relative
 

BR_ANA

Registered User
Jun 27, 2012
1,080
0
Brazil
On 3th world country, a hospital complain more effective is on newspaper or television.

Sorry for your lost.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Thanks for this. I'm not prepared to go through the hospital this time around. I am going to make sure they listen which they didn't last time and actually the standard of care was akin to abuse and so a complaints procedure is not enough even if it did work

i'm pleased it worked for you but my hospital has already proved that they don't listen. The only way is a legal route I'm just not sure where to start. i have already requested records
Anyone any advice on the legal route?

Thanks to everyone for your good wishes


Hi,
I have recently got to the end of the official complaints procedure with my local NHS Trust, so can give you a little information.
- The Trust running the hospital should have an official complaints process. This is bound to be on their website somewhere, and is separate from the PALS service, although if you can't find it presumably PALS could at least tell you how to find it on the website or are likely to have a printed pamphlet.
- Make sure you set out relevant facts, rather than getting distracted by the emotion - not so easy but important if you want to be taken seriously.
- You may be offered the option of a formal meeting rather than a complete written process. What's best probably depends on the facts. In my case I elected to have a meeting which was quite daunting as it was attended by senior managers covering each of the aspects I'd complained about (A&E, ward, dementia support people etc).
When you get a written response systematically analyse it and don't accept without challenge anything that doesn't sound completely plausible.
- If you're not satisfied that they've given you the full facts insist on having access to the medical notes. They'll probably resist but you should be able to get them. And make sure you get given everything if you go down that road. At some trusts they keep the nursing records separate from the medical file because the nursing records are voluminous (includes all detailed stuff about fluids, temperature checks etc etc).
- If you're not happy with the outcome of the complaint process you can complain to the NHS ombudsman about the matter itself, and also if appropriate about how the complaint was handled. You can't do this until the complaint process is completely finished, but you must do it within a year (calculated I think from the date of the thing you're complaining about).
- If you need support in the complaints process you can identify a local free advocacy service through "Healthwatch" (further info see "Making a Complaint" on the NHS Choices website).
NB this all assumes you are in England.....

It's worth complaining. My local trust has actually introduced a couple of improvements following my complaint, which will benefit other people even though it was too late for my relative
 

annie h

Registered User
Jun 1, 2013
148
0
Was in two minds whether to comment further but I've been where you are and do sympathise so I'll just comment and then run!

Legal action and the official complaints process are not mere alternatives for dealing with poor care. Legal action requires a showing of medical negligence or equivalent, proven on the balance of probability by admissible evidence. It isn't clear from your posts that you've appreciated this difference as you speak about "standard of care" and merely "akin to abuse" whereas you'd effectively have to prove it was actually abuse in some sense. It would probably be better if you waited a week or two until you were feeling a little less emotional following your loss and sought some advice from a specialist solicitor before deciding what to do - not least because the legal action route is also costly and very stressful which is the last thing you need. I wish you luck whatever you decide. I'm still angry one year on...........
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Hi Annie thank you. Over the three days there were several incidents of negligence - for example I told the night nurses that I was leaving for 6 hours and that my Ma was in a critical condition - referred them back to the notes and they did not go into her room so she was freezing cold in the morning and her chest infection had gone to double pneumonia. The carer had shovelled weetabix into her mouth but not waited to see if she was swallowing so when i arrived she was lying freezing cold with weetabix pooled on her chest. I don't know if any of that counts as negligence but I suspect if I was looking after her at home and she was found it that state I would be accused of either negligence or abuse! I have a catalogue of incidents that need to be considered. I have ordered the medical notes from the hospital.

I do need a specialist solicitor and that is why I came onto the site really to see if I could find out how to go about finding one. I'm guessing that with the right evidence someone who is interested in elder care may take it up on a no win no fee but the most important task for me is to find the right solicitor - any ideas?

I think I come across as very emotional because I am angry but actually I am also passionate about the care of the elderly and maybe some of that passion is making me sound overwrought.

In fact I am quite calm about the events of the 3 days and have a clear and detailed recording of exactly what happened. Just a pity that my hi tech snap happy daughter wasn't there or I would have had a photographic record too!!!


Was in two minds whether to comment further but I've been where you are and do sympathise so I'll just comment and then run!

Legal action and the official complaints process are not mere alternatives for dealing with poor care. Legal action requires a showing of medical negligence or equivalent, proven on the balance of probability by admissible evidence. It isn't clear from your posts that you've appreciated this difference as you speak about "standard of care" and merely "akin to abuse" whereas you'd effectively have to prove it was actually abuse in some sense. It would probably be better if you waited a week or two until you were feeling a little less emotional following your loss and sought some advice from a specialist solicitor before deciding what to do - not least because the legal action route is also costly and very stressful which is the last thing you need. I wish you luck whatever you decide. I'm still angry one year on...........
 

annie h

Registered User
Jun 1, 2013
148
0
Hi Fizzie,
I'm sorry, that sounds so familiar to me although my mum actually survived to be discharged (badly) and pass away six months later. I have a couple of suggestions for things you should think about.

Remember you have to show not merely that the things you describe happened but that they amount to negligence. So relevant factors may be whether your mum had had a SALT assessment showing she had difficulty eating without assistance, or alternatively that you'd reported that she needed assistance - eg does your hospital use the This is Me form, had they bothered to ask you to complete it, and had you put anything relevant on it that they'd ignored. They will no doubt say "we didn't know the lady and didn't know she needed assistance with eating" so you need to show that's wrong.

Were they following the correct procedures in assessing your mother (for example were they assessing her with verbal methods when the hospital protocols perhaps would have required them to use non-verbal techniques)?

With regard to contingency fee basis legal advice, don't necessarily go for one of the "ambulance chasing" firms that have high profile ad campaigns, but check the solicitor you are considering does have specialist experience and interview more than one firm, checking that you won't be charged for a preliminary meeting for the purposes of deciding whether they are the one you want to use. There is advice about what you should expect from solicitors and charging methods on the Legal Ombudsman website. Ask probing questions about what the maximum potential award would be and consider whether there will be anything left over - possibly there won't be as normally awards in such cases aren't particularly high (brutally speaking the period was short and your mother wasn't left alive with life-changing disabilities resulting from the bad treatment). In any case they will only take the case on on that basis if there is a good chance of winning so that their fees will be covered!

I hope some of that helps.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Thanks Annie this is really helpful

My Ma hadn't been assessed for eating because the previous day she was eating normally, the day before she had been at her lunch club (as she had for each day in the previous week) so she had no need to be assessed for eating. Just before I left the previous evening she had eaten a yoghurt quite happily as a late evening snack after her evening meal. So there was no need to assess her. The key was that they left her, without checking her and she was FROZEN hence the fast decline to double pneumonia. I could see straight away that she was non-responsive so the last thing anyone with any common sense would have done was to have shovelled 3 spoons of Weetabix into the mouth of someone who appeared to be almost comatose and then walk away and leave them!

I agree with what you are saying about the award - I guess it is possible that there wouldn' t be much to show for months of stress. I thought it might make the Trust sit up and listen but actually someone told me yesterday that this particular Trust just paid out 4.5 million to a surgeon for wrongful dismissal and it has made no difference to their practise at all. The general feeling was that they just pay out the money without a second thought. So maybe it won't help and maybe I should go the PALS/Healthwatch route. I only wanted to do it because they didn't listen when I went that route when my husband died.....but the truth is that they just don't listen ..............

Your advice is really helpful and greatly appreciated.

Hi Fizzie,
I'm sorry, that sounds so familiar to me although my mum actually survived to be discharged (badly) and pass away six months later. I have a couple of suggestions for things you should think about.

Remember you have to show not merely that the things you describe happened but that they amount to negligence. So relevant factors may be whether your mum had had a SALT assessment showing she had difficulty eating without assistance, or alternatively that you'd reported that she needed assistance - eg does your hospital use the This is Me form, had they bothered to ask you to complete it, and had you put anything relevant on it that they'd ignored. They will no doubt say "we didn't know the lady and didn't know she needed assistance with eating" so you need to show that's wrong.

Were they following the correct procedures in assessing your mother (for example were they assessing her with verbal methods when the hospital protocols perhaps would have required them to use non-verbal techniques)?

With regard to contingency fee basis legal advice, don't necessarily go for one of the "ambulance chasing" firms that have high profile ad campaigns, but check the solicitor you are considering does have specialist experience and interview more than one firm, checking that you won't be charged for a preliminary meeting for the purposes of deciding whether they are the one you want to use. There is advice about what you should expect from solicitors and charging methods on the Legal Ombudsman website. Ask probing questions about what the maximum potential award would be and consider whether there will be anything left over - possibly there won't be as normally awards in such cases aren't particularly high (brutally speaking the period was short and your mother wasn't left alive with life-changing disabilities resulting from the bad treatment). In any case they will only take the case on on that basis if there is a good chance of winning so that their fees will be covered!

I hope some of that helps.
 

annie h

Registered User
Jun 1, 2013
148
0
Fizzie,
Glad it was of some help. For avoidance of doubt, PALS are not the complaints procedure. But they should be able to provide you with details of your hospital's official complaints procedure - probably a leaflet. There is more info on http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx
and your hospital would have to have an official complaints procedure that complies with the national NHS policy.

I really hope you get listened to this time, however you go forward. Not enough people speak up about this sort of thing!
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Yes thanks I have the complaints procedure. What I am not clear about is that is the complaints procedure has an unsatisfactory outcome is it still possible to go the legal route at that stage

Fizzie,
Glad it was of some help. For avoidance of doubt, PALS are not the complaints procedure. But they should be able to provide you with details of your hospital's official complaints procedure - probably a leaflet. There is more info on http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx
and your hospital would have to have an official complaints procedure that complies with the national NHS policy.

I really hope you get listened to this time, however you go forward. Not enough people speak up about this sort of thing!
 

annie h

Registered User
Jun 1, 2013
148
0
If the outcome of the complaints procedure is unsatisfactory you have the right to refer the complaint to the NHS Ombudsman.

Also, did you know that you can provide details of your concerns about the hospital to the CQC so that their inspectors will be aware of your feedback when they next do an inspection? There is a link "Share your experience" from the entry for the hospital on the CQC website. (Not sure it achieves much, but might make you feel better knowing that you've increased the likelihood poor dementia care will be picked up on the next inspection.)

I can't see why making a complaint would preclude your starting legal action later, but maybe someone else will know this. In fact it's conceivable that information that came out in a complaints procedure would provide a basis for legal action that wasn't previously known The practical down side is that when the complaints procedure is finished the events will be months into the past so you'd need to make sure that you had really complete records in case you needed them later.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Thanks Annie x
If the outcome of the complaints procedure is unsatisfactory you have the right to refer the complaint to the NHS Ombudsman.

Also, did you know that you can provide details of your concerns about the hospital to the CQC so that their inspectors will be aware of your feedback when they next do an inspection? There is a link "Share your experience" from the entry for the hospital on the CQC website. (Not sure it achieves much, but might make you feel better knowing that you've increased the likelihood poor dementia care will be picked up on the next inspection.)

I can't see why making a complaint would preclude your starting legal action later, but maybe someone else will know this. In fact it's conceivable that information that came out in a complaints procedure would provide a basis for legal action that wasn't previously known The practical down side is that when the complaints procedure is finished the events will be months into the past so you'd need to make sure that you had really complete records in case you needed them later.
 

philamillan

Registered User
Feb 26, 2015
96
0
Very sadly I can see how difficult these situations can be for relatives. The truth is that our current system is not designed for the number of patients who are suffering with dementia. This leads to poor care and when you add on top of that the skeleton staff then they end up choosing to care for those that can complain!

The biggest challenge for the patient with dementia in hospital is how to have a voice. Currently they often are unable to indicate their needs and can therefore be easily ignored. The families who would advocate for them are around for only a few hours because of visiting. Often they do not know what is really happening.

How can change happen? The usual complaints tend to target the care on the ward which can identify a particular person at times. Although they may face disciplinary actions it is not going to change anything for the next patient. The reason is that poor care is often because of inadequate staffing on the wards. It is easy for managers to hide behind the event and point a finger.

Standards only improve when the individuals who hold the purse strings feel threatened. Maybe the focus on corporate responsibility is the way forward. If these wards are continually being under staffed then management must take the responsibility.

I really do wish you have some resolution in this process but expect the usual platitudes in your meetings. I would encourage you to continue to apply the pressure as someone has to try to change things.

Sorry about your loss and may that sorrow eventually become your joy.