"The Treatment of My Father who also had Alzheimers"

About: General practices in Greater Glasgow & Clyde NHS 24 / NHS 24 (111 service) Royal Alexandra Hospital / Accident & Emergency Royal Alexandra Hospital / General Medicine Scottish Ambulance Service / Emergency Ambulance

(as a relative),

My dad had a fall while in a care home.  His GP was called and they said it was a urine infection, so gave him the old antibiotics.  Staff in the care home were concerned that he was not speaking right but the GP said he had bitten his tongue.  Well 2 days went by and he got no better and the GP was called out again and duly came.  The staff in the care home asked for a speech and language assessment but the GP said no.  The GP stated clearly that this was the way this man spoke and they should know after all they were the family GP.  The staff in the home were clear this was not how they knew this man and he could speak properly - basically nothing the care home staff said seemed to matter.

Few days went past and dad had another fall and again the GP was sent for - they asked him to do a number of things after the GP snapped their fingers at each ear where dad tried to look, the GP said he was fine but did change the medication.  By evening of the same day the care home staff were concerned and called NHS24 who asked several questions - but as he was able to answer the questions the staff did ask if it was okay for him to go to sleep as this is what dad kept asking for - they were told yes as he appeared to be answering the correct questions.  The following day dad seemed not quite himself and did not want to speak, eat or talk he just wanted to go to bed and his speech was a bit clearer.

Later on that evening the care home called to say dad was in a bad way and that at NHS24 had been called and a doctor had seen him and called an ambulance.  My sister went to the care home, while I went straight up to the Royal Alexandria Hospital where I stood outside Accident and Emergency.  After about half an hour my sister phoned to say still no ambulance, they must be busy.  I replied they can't be there am looking at 4 sitting here, with the lead one cleaning the inside with blue paper towel, then going for a coffee.  I felt so angry at that point.  I left the hospital and drove from the RAH to the care home to sit with my sister and dad while we waited on the ambulance.  After about four hours I am assuming it was NHS24 who called to asked if there was any change in my dad's condition, the staff member said no.  At this point my dad is struggling to breath and was not really fully conscious but was aware we were there as he would not let go your hand.  After the telephone call ended we were informed that my dad had been moved to a category one and an ambulance was not on its way.  My goodness a sole paramedic arrived within 5 minutes followed by an ambulance and 2 paramedics, who immediately started giving my dad oxygen.  The paramedics were told of the previous falls and because dad was complaining of a sore neck but would not let the paramedics put on a collar they felt they were putting him in more distress and decided to leave the collar off, but I can say clearly they were very careful when transferring dad from his bed to the ambulance trolley.  The paramedic asked if there was any notes left either from the NHS24 out of hours doctor or GP and the staff gave them a letter I think that the GP had left.  So off we went to the RAH,.  I left to get there as I was driving while my sister went with dad in the ambulance

Despite the RAH being busy dad was seen really quickly and was assessed by a nurse who went to speak to a doctor after reading the letter the paramedics had given her, as it was felt his pain and how he was presenting was more important at that time.  The Accident and Emergency staff were absolutely fantastic as was the young doctor who examined him.  The doctor managed to persuade him to go for the xray then a scan as he was concerned at the level of pain dad was in.  In addition they decided to give him morphine, although carefully monitored the dose - I don't think he was given an extreme amount as he remained in pain.  The results of the scan proved to be concerning the the young doctor had to call a consultant, who I believe would see dad when he got into the hospital in the morning - but a collar was required.  My goodness I have never in my life seen such a collar as it turns out dad had a break in neck.

We only had to wait about 25/30 minutes before he was taken to a ward, but by then the morphine must have been working and he was laughing and talking nonsense. A nurse came in and asked us if we could try and give him a cup of tea and a slice of toast (it did say over his bed nil by mouth), but hey this was tried but because he was not able to open his mouth to chew because of the size of the collar and the fact we were asking him to drink through a straw, which did not come natural - and because he had been struggling to breath for such a long time, his lips were stuck with gunge when you put the straw into his mouth it actually stuck to his lips so you were hurting him.  After about half an hour I left to go back to the care home to let them know about his neck and collect some clothes and toiletries.  I returned to the hospital about 3 hours later and when I stepped out the lift I could actually hear my dad screaming asking for someone to help him.  He was in a room of his own, facing the nurses station, when I got into the room he was fighting something that he was seeing coming down to get him and he was swearing at whatever it was.  I knew at that point it was the morphine, he was hallucinating.  No matter what I done he was scrambling to get out that bed  - where he was getting that strength from I will never know.  After about 15/20 minutes a nurse came into the room to let me know that the bandages on his arm and leg were as a result of him hitting them off the bar on the bed, when trying to get out.  I asked them if they could not see he was hallucinating and that this must be the morphine - I told them not to give him anymore and that he could not stay in the hospital, as he is confused enough and now he is scared out his wits.  I was quickly told that the care home would not take him back without mobility and I said I would go there right now and ask them.  Which I did and the care home agree they would take him back even if he did not have mobility.  I returned to the hospital and the staff member did not believe me and called the care home and then came to me and confirmed exactly what I had said.  I was also told that the consultant was not going to do anything for dad and that the collar would remain on him for about 10 weeks - I asked when he was being discharged and they said tomorrow or the following day.  I went up later that evening and he was a bit more peaceful.  The phone call the next morning confirmed he was getting out that day and that patient transport was being arranged.  We were told not to go to the hospital so we asked the care home to let us know when he arrived back with them.  6 hours later he arrived back in the care home - he certainly recognised where he was but the staff were concerned about the size of the collar that they were told not to remove -so were wondering how do they get his clothes off, wash him and brush his teeth.  We were also told that to avoid aspiration that all his drinks would have to be thickened (some crystal stuff that made his tea after a few minutes run like thick custard - he would not think about drinking this, he couldn't get it through the straw as the collar did not allow him to tilt the cup upwards to drink normally.

The care home staff contacted the GP to ask for dad's medication to be prescribed in liquid form, which was done eventually.  Dad seemed to go downhill after that each day he did not want to be in noise, eat or drink and the GP was called.  The GP did contact me to ask if I had a DNR out and I said yes.  Near the end of the week the care home staff ordered a hospital bed for dad as he was now in a bad way.  The GP was meant to arrange for a prescription but this did not happen.  NHS24 were once again called out and a doctor arrived and was informed that dad could not have morphine but he was in a lot of pain and was actually choking in his own saliva.  There had been some discussion about putting in a driver which I did not know at that time what that meant.  The out of hours doctor did not know what alternative there was more morphine and started calling charities that deal with cancer patients etc.  Whatever medication was found as an alternative because it was late at night (by now it was about 10.40 pm) there was only one pharmacist open in Knightwood - I was asked if I would go and pick up the medication - I said even if I knew how to get there I could not get from where I was into Glasgow in 20 minutes.  Give the doctor credit she persisted and tracked down a pharmacist who was willing to open a chemist in Paisley and asked me to be there at 11 pm.  This happened.  I thought he would have relief when I got back but low and behold when the care home staff tried to get the nurse back to give him the medication, he was now third in a Queue so we waited a further 2 hours.  Nurses had to be called 3 times that evening till eventually he was given something to stop him creating saliva that was choking him.  He seemed peaceful enough and by now I know the inevitable is about to happen.  It was about 5 am so I went home to change my clothes and get something to eat with my sister and returned just after 9 am only to find my dad choking again and back to struggling to take a breath.  Throughout the day there were several different nurses came and eventually the driver was put into dad although one specific nurse was concerned that the medication he was given was not sufficient to meet his pain level, although he was not speaking he just was gasping for breath - eventually a nurse said she would return and if he was the same she would have to contact someone to give dad something else - we asked if he could not get the medication he must have received the previous evening as he was chocking in his saliva.  I don't know if he was given anything but it was not nice to watch him struggle when he could not swallow or breath -he passed away that day around 4.30 pm.  A nurse was called to verify time for the records I understand.  I am told that a fax with this information will be sent to the GP to allow a death certificate to be arranged so should have no problem on the monday.

Well monday came and off I went to the GP surgery to pick up a death certificate - staff are not aware my dad has died and there is no certificate.  By now the undertaker had arranged for me to go to the registrars later that morning so I held my breath waiting on the GP - time ticked on and the registrars was cancelled and another appointment arranged at a different registrars as there was none available at the local registrar.  I went to the GP again and was informed by the receptionist that NHS24 had not faxed the relevant paperwork and that the GP was not in today.  I lost my temper went up to the care home who phoned I have no idea, they could not understand this.  Eventually a GP called me saying that he has a few tick boxes that have to be completed so as he has me on the phone we could just do it now - he asked if I was okay with death certificate stating Chest Infection and Dementia.  Am not a doctor had to assume this was okay even though I knew dad had Alzheimer's.  After a few questions he suddenly says oh I don know if the procurator  fiscal  will accept this I will drop them an email.  I asked how long do I have to wait cause now I will have to cancel yet another registrars appointment - the GP then says there may be an investigation.  To cut a long story short there was one and the police had to take statements from various agencies and individuals including myself - the police woman was brilliant and said she would have everything ready to return to the fiscal office after the GP had replied - once again the GP info is what they are waiting on.  Am asked by the Police if I have any concerns at the care of dad and I say YES the GP who on many occasions when called never attended to see dad and just sent prescriptions, the fact the GP has saw dad not once but twice and 2 different ones and one actually trying to make him look to the left and right.  The Police asked if I wanted it noted but I asked would it hold up proceedings and YES was the reply so I said NO, I will deal with it later I need my dad put to rest.  Police phone me 3 days later - all complete death certificate with your GP who is doing it know - I tell the undertaker who makes a further appointment with yet another different registry office - so then called the GP who informs me they have no death certificate don't know what am talking about - I loss it with her big time - I ask her to get it checked out and that I have the appointment at the registrars and am not going to cancel again, hey your right it got cancelled.  I got the certificate three and a half hours later I was called by the practice to let me know it was ready - when I went in to collect it the receptionists continued to chat between themselves with one picking up an envelope and handing to me - I was in such a bad mood if I had opened my mouth they would have got the sharp end of my tongue.  The undertaker made yet another appointment outwith my local authority area to get my dad registered so that all could go ahead on the planned day we had held 5 days earlier.  The undertaker was my life saver during all this as was the care home staff, who I have to say were fantastic during and throughout my dad's final weeks and they too were not at fault.

The purpose of me telling this story is to share how all can go wrong, how we need and rely on good GPs and health care staff and how one can let the other down causing heartache.  I am going to complain to all relevant bodies to find out where it all went wrong and why I feel so let down by one healthcare professional

Treatment

Treatment


Pain relief

Pain relief


Calling for help

Calling for help


Care staff

Care staff


Responses

Response from Nicole McInally, Patient Experience and Public Involvement Team, NHS Greater Glasgow and Clyde

Dear Confused Daughter

Please accept my deepest sympathies on the loss of your Dad. I understand that this is a difficult time for you and your family and my thoughts are with you.

I am so sorry to read about your Dad’s experience, this is certainly not the standard of care that we would expect for any of our patients and their families and I sincerely apologise for this.

You have raised a number of serious issues regarding your Dad’s care. As this involves several different organisations within the NHS, it would be really helpful if you could contact Nicole McInally with your Dad’s details. Nicole’s email address is Nicole.McInally@ggc.scot.nhs.uk and her telephone number is: 0141 201 0372.

Thank you

Margaret McGuire

Nurse Director

NHS Greater Glasgow and Clyde

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Response from Shona Lawrence, Patient Affairs Manager, NHS 24

picture of Shona Lawrence

Dear Confused Daughter

Thank you for sharing your story on Care Opinion. I would like to offer you my sincere condolences on the sad loss of your father and I appreciate that this will remain a very difficult time for you.

I understand that you have already raised a complaint with NHS 24 directly and I would like to thank you for this. This has provided us with an opportunity to review the contact with our service. We welcome feedback and are pleased to engage with service users.

We will ensure that our findings are shared with you and would be pleased to meet with you if you would find this helpful.

In the meantime, please do not hesitate to contact our Patient Affairs Team on 0141 337 4597 or by email at patientaffairs@nhs24.scot.nhs.uk

With kind regards

Shona

Shona Lawrence

NHS 24 Patient Affairs Manager

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Response from Alan Martin, Patient Experience Manager, Corporate Affairs and Engagement, Scottish Ambulance Service

Dear Confused Daughter,

May I please mirror my colleagues in offering our deepest sympathies at the loss of your father. It sounds like it has been and still is a very distressing time for you and your family.

I am troubled to read about your points raised about what you had seen at the hospital and I would like to have this looked into for you from the Ambulance response time side of things. I have looked in our system and I cannot seem to see that a complaint has been logged as of yet as it has been with NHS24. If I could ask you to email me at alan.martin2@nhs.net I can move this forward for you.

Kind Regards

Alan

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Update posted by Confused Daughter (a relative)

I did submit a complaint and will email you direct with reference number given

Response from Nicole McInally, Patient Experience and Public Involvement Team, NHS Greater Glasgow and Clyde

Dear Confused Daughter

Firstly, please accept my sincere condolences on the loss of your Dad on behalf of Renfrewshire HSCP.

I am sorry for the distressing experience yourself and your family have endured as a result of your involvement with a number of Health and Social Care services.

The care experience of your Dad and family has fallen short of the high standards of care we strive to deliver, and as such we will endeavour to investigate these matters following due process, in particular to highlight any learning.

Yours sincerely

David Leese

Chief Officer

Renfrewshire HSCP

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Response from Marie Farrell, Sector Director - Clyde, NHS Greater Glasgow and Clyde

picture of Marie Farrell

Dear Confused Daughter

I wish to add my condolences on the loss of your dearly beloved dad. There are no words to express how sorry I am that the care of your dad fell considerably below what we would aim to deliver. It clearly made this extremely difficult time much worse for you and your family.

I am aware that we are investigating the issues about the RAH and that we will respond in due course. In the meantime if you would like contact me directly, I can be reached at Marie.Farrell@ggc.scot.nhs.uk

Kindest regards

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Update posted by Confused Daughter (a relative)

I have many words and emails so far but have no outcome of investigations etc so feel I am not able to provide honest feedback on helpful or non helpful responses to date

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