The Reason we are Here
We receive many upsetting and infuriating emails and posts to our website and Facebook page, but never have we read anything as horrific as this story. This was emailed to the website this afternoon and sums up exactly why we are determined to challenge this system.
Please be aware this is a shocking story which contains a harrowing account of an attempted suicide in a Nursing Home. It has been published with the agreement of the author.
As you read this account, you will see that there are two threads inter-twined. The CHC process and my Mothers suicide attempt at a Nursing Home the CCG referred her to. My 92 year old Mother lived independently in her own home until 10 March 2019. I, her daughter was her primary carer for 23 years with full LPOA and EPOA. Mum was in the garden when she fell over, broke her left hip and suffered a heart attack. She was taken to A&E and the next day to a ward where she spent eight weeks. Due to the condition of her heart, doctors were reluctant to operate on her hip which remained un-united requiring her to be nursed in bed.
Because of my Mother’s fluctuating health, the hospital viewed her as a ’bed blocker’. It was decided that Mum may be eligible for NHS Continuing Health Care (CHC) so a Checklist was conducted by the discharge team. The score was high enough to enable Mum to be properly and fully assessed for CHC funding using the Decision Support Tool (DST). Fortunately, my husband and I had already started making contemporaneous notes of visits and telephone calls to help with the DST. We didn’t realise just how important these notes would become until later.
During this period, the family were under constant and considerable pressure to agree to a nursing home placement, receiving constant telephone calls from the hospital discharge team and the Clinical Commissioning Group (CCG). On one occasion as many as five calls in one day. We found this totally unnecessary as it put a lot stress on the family at such a difficult time.
One morning, I received a telephone call out of the blue from the Manager of a Nursing Home to say that they had been asked by the CCG to accept Mum. I was called as the manager felt it was only right that I was made aware. However, it was made quite clear from what she said, that the CCG would be placing Mum in the NH regardless. I visited the Nursing Home the next day and agreed on the placement as the room they offered was on the ground floor and looked out onto a nice garden.
Mum was discharged to the Nursing Home on the 1 May 2019 on a 28 day Placement without Prejudice (PWP) basis. I visited my Mother the next day and was shocked to find her eating her lunch in a dirty top and wearing nothing else but a continence pad. There was food over the bed covers. This was a very worrying sign of things to come and I was really annoyed. My Mother was always dressed clean and tidy and would never have worn soiled clothing. I and my husband began to visit my Mother every day and we felt in our opinion my Mothers care was sloppy and substandard. This was a Nursing Home commissioned by the CCG.
On our visits, we often found Mum without water. Drinks were left out of reach and the call bell was often left on the wall in its cradle. Mum lost 6.2 kg in ten weeks at the Nursing Home, her medication was not managed which resulted an emergency trip to A&E. Mum had a history of mental ill health and was becoming increasingly depressed as she was left in her room on her own. The staff didn’t have time to stop and chat with her. There was no social activity or stimulation for her. She was lonely. Despite my mother wanting female only carers to conduct personal care, often male carers were used against her and the family’s wishes.
After my Mother’s placement, there had been no contact from the CCG despite our LPOA/EPOA. By accident, I found correspondence addressed to my Mother from the CHC admin team who were trying to arrange her DST. These were put in her file and never handed to her or us. I have a copy of an email where the NH is asking if the CCG will inform the family of the DST arrangement, they never did. The CCG had tried to arrange the DST three times behind our backs and completely ignored our LPOA/EPOA.
At the end of May, there was a serious deterioration in my Mothers condition. The GP felt that she had the beginnings of a pneumonia infection. The GP explained that my Mother’s situation was serious and her life expectancy was a couple of months, probably weeks. By this time we had already engaged the services of Beacon CHC, to guide us through the maze that is a DST assessment. Our Beacon advocate advised a Fast Track be submitted through the GP.
Following an appointment with the GP, a CHC Fast Track application was submitted as the GP was satisfied that my Mother’s primary health need was rapidly deteriorating and may be entering a terminal phase.
A week later having heard nothing, I telephoned the CCG to find out what was happening with the Fast Track. I spoke to a rude and aggressive CCG administrator who said that as my Mother was not on end of life medication she didn’t qualify. I tried to question her over her knowledge of the fast track process. She either didn’t want to answer my questions and/ or her awareness of the process and the law was non-existent. This administrator could see I wasn’t going to give up easily, so she changed tack and begun to accuse me of being aggressive. At one point she was shouting down the telephone that she would terminate the call. I wasn’t aggressive. I simply didn’t understand why she had ignored my Mother’s GP and his professional opinion. I became so upset that my husband took the telephone from me and told the administrator basically to do her worst and terminated the call. This attitude was unacceptable, unlawful and extremely unkind as the family were very vulnerable at the time, especially after the GP had told us that my Mother may only have a matter of weeks left.
I found out later by reading my Mother’s GP medical records that this CCG admin person had called the GP Surgery and tried to bully the Practice Manager into retracting the Fast Track. As this hadn’t worked, the CCG then denied the Fast Track by using the excuse that my Mother was still being funded by the 28 day PWP even though the 28 days had expired. I suspect that this delay was due to their incompetence. The CCG said that the Fast Track wasn’t necessary. What a dirty trick.
The CCG should not have used this reasoning as a means of circumventing the use of the Fast Track Pathway Tool, when my Mother clearly satisfied the criteria for its use. Had the CCG applied the guidelines and more importantly the law as they should have, it would have spared my Mother and the family the distress and anxiety caused by the unnecessary use of the DST Assessment at such a difficult and stressful time. This is a prime example of why the Fast Track is worded in the National Framework the way it is.
On Saturday 29 June, at 18:20 the NH’s duty nurse telephoned me at home. She told me that Mum had tried to get out of bed and in doing so had got the call bell wire caught around her leg (broken hip side) which had caused a wound. I was obviously concerned but I was assured Mum was settled and fine and that a visit to the Nursing Home was unnecessary. The Nurse went on to tell me that she had removed the call bell so in future Mum would have to shout for help instead. I was so taken aback by this, it didn’t sink in as my mind was in turmoil.
I visited Mum the following day and found her without a call bell and a large dressing on her lower left leg (broken hip side) which was soaked in blood and fluids and leaking onto the sheets. In the following days a relative of another resident pulled me to one side and told me that he often hears my Mother shouting for help or banging on the table.
A DST meeting to decide who would be paying for Mums care was scheduled for 19 July 2019. Together with us at the meeting would be two Nurses from the CCG, a Social Worker and a Nurse representing the Nursing Home. The family had the services of a Beacon advocate to represent us. On the previous afternoon of the 18 July our advocate went to the Nursing Home to look at the records they kept of my Mothers care. It appeared that many records were missing or simply not presented to our advocate. In particular our advocate asked the Nursing Home to produce Behaviour Charts as there were none offered. Not even one explaining the June incident where she hurt her leg.
On the day of the DST we arrived early to find our advocate was already there. She told my husband and I to come into the meeting room and take a seat as she had something serious to show us. She then presented me with three behaviour charts, two of which covered the incident on the 29 June 2019. What I read was truly shocking. I quote, ‘Carers heard a bang as if something had fallen – on getting to her room, her table was sideways on the floor and she was found with the call bell cable/wire around her neck which was knotted.’ Another area of the chart states, ‘The cable was removed/unknotted with the help of 8 staff which included the nurse.’ I couldn’t believe what I was reading. I was speechless. I showed it to my husband as it was clear that we had been deliberately misled by the account given to me by the nurse on the telephone on 29 June.
Before the DST started, the two MDT nurses went to visit my Mother in her room. The Social Worker had not yet arrived. I followed and saw the MDT Nurses leaning over my Mother in her bed. Mum was crying and grabbing at the net curtains. Contrary to what the MDT recorded in their assessment, she couldn’t possible have given details of her care and nursing needs as she was so distressed. Her fluctuating cognition was reiterated in a letter by the GP that was written specifically for the DST meeting. At the time Mum had no call bell and even though the MDT said it was unsatisfactory, they did nothing about it.
At this point, we had a very serious safeguarding issue on our hands. I now felt everything that had been going on had just fallen into place. We also discovered that the GP had not been informed, no risk assessments were undertaken and more importantly, her room had not been made safe. Following this disclosure and despite our objections and distress, we were forced to go ahead with the DST meeting which we did for fear of losing what little funding we did have.
The response from the CHC team was absolutely appalling as they tried to make light of it. Despite seeing my reaction to this news and the upset it caused, they couldn’t care less. Neither team member from the CHC or Social Services suggested that the DST be postponed. I was disgusted. I was simply told to speak to the Social Worker at the end of the DST. After reading the behaviour chart out loud regarding the suicide attempt one of the MDT team told me, “Old people say those sorts of things”. I said, “Yes, but she actually tried it! Do you want it on your conscience?”
The senior Nurse at the NH was replaced by another Nurse who informed the meeting that she could only stay for an hour. That was on the instructions of the Homes’ owner. Our Advocate challenged this but the MDT Coordinator stated that the CCG do not include Care Home staff as part of the MDT.
The MDT were clearly not going any further with the safeguarding at this stage as they just wanted to get on with the DST. We challenged the lack of records produced by the NH which was inexcusable. The NH had had three weeks to prepare the records but gave the excuse of not being able find them, they were mixed with other residents records or they didn’t have the time. To the family it smacked of a conspiracy.
We reiterated our understanding that the MDT must draw together input about all aspects of my Mother’s health and care needs and risks. Without this input the assessment is unsafe. When challenged that this was not in compliance with National Framework, the MDT Coordinator said “that is how the CCG do things”.
Because the Care Home Nurse was only allowed to be present for one hour our Advocate requested that certain domains are covered first whilst the NH nurse was still present. The MDT Co-ordinator disagreed. Instead she went ahead with her own domains in the order as laid out in the DST document. Even the GPs additional supporting letter especially written for the DST meeting was given a cursory glance and put to one side. The Assessment continued rushed and hurried.
It was unsafe, unfair and unacceptable to conduct a DST assessment without all relevant documentation and reports. The NH provided scant records and apart from the 3 Behaviour Charts which were probably given by mistake, that was it. For example, there were no SALT, MUST or Dieticians reports (my Mother had significant weight loss 6.2 kg in 10 weeks) and the MDT told us that it would take weeks to arrange these appointments. The MDT also appeared to pay more notice of the NH rather than to me her Daughter with a 23 year history as her primary carer. After all this we weren’t surprised that there were no discussions as to whether my Mother was beyond the capability of the Local Authority to look after her (Coughlan test, 1999). When it came to marking the various domains, contrary to the National Framework, where it states that if there is a disagreement between parties domains should be marked up, they were always marked down.
We had meticulously prepared for this meeting in order to give my Mother the best possible chance of securing NHS CHC funding. The DST simply turned out to be a tick box exercise, as it was quite clear to us that my Mother was being pushed down the Social Care route where she would have to self-fund. It was a complete and utter farce, unlawful and we believe that there was a conspiracy between the NH and the CCG.
Afterwards our advocate told us that it was the worst DST Assessment meeting she had ever taken part in in her 25 years.
We, the family raised the safeguarding issue ourselves and subsequently called the Police. An investigation was undertaken by the CCG who were responsible for placing her in the Nursing Home. The family felt that this was ‘turkeys voting for Christmas!’
Having spoken to my Mother about all of this, she asked me to move her from the home as she didn’t want to stay there. She was frightened over possible reprisals, as were the family.
I made an urgent appointment with the GP who agreed with me that she should be moved as soon as possible. This was further reinforced by the Social Worker who made an unannounced visit, the Community Psychiatric Nurse and the Consultant Psychiatrist during her visit. Despite being assured by the CCG that they were looking for an alternative placement, the family subsequently learnt several weeks later that the CCG had absolutely no intention of moving her and failed to inform the family of their decision. They lied to us. I was absolutely furious and appalled when I found out.
My Mother’s condition started to deteriorate and on 31 July, I insisted that an Ambulance be called as my Mother had Cheney Stokes breathing. The attending Paramedics admonished the duty nurse for failing to administer end of life meds sooner as my Mother was in the final stages. My Mother’s final days were more distressing than they should have been. She wasn’t even afforded the dignity of a peaceful ending.
On Saturday 3 August, just two weeks after our DST meeting, my Mother passed away in the Nursing Home. The last two weeks of her life were filled with fear over the way she was being treated. I and the family were so worried for her safety that we visited at least once and sometimes twice a day. What a terrible way to spend the last days of your life trapped in a place and unable to escape.
I truly believe that the poor treatment my Mother suffered during her residency at the Nursing Home, significantly contributed to her feeling of fear and anguish, her persistent low mood which probably led to her suicide attempt.
To rub salt into the wounds, the CCG told my late Mother’s MP in a letter which was forwarded to me, that they had granted CHC funding on the 5 August 2019, three days after she died. The CCG didn’t even afford us the common courtesy of notifying us but we suspect that the funding was only granted after her death, just to improve their performance targets.
My Mother had complex needs and in my opinion the CCG should never have referred her to this particular Nursing Home. Especially as according to the Care Quality Commission (CQC) this Nursing Home is not a service that specialised in supporting people with enduring mental ill health and as such, the staff were not trained to identify or respond to serious incidences of mental ill health. I ask myself why did the CCG refer her to this Nursing Home knowing their lack of Registration for Enduring Mental Ill Health and/or why did the Nursing Home agree to accept her knowing her mental health history. I wonder, was it because she would have been a self-funder after the 28 day PWP expired. As we have learnt CHC funding approval is heavily weighed against you no matter how serious your health and nursing needs are. In my opinion, the Nursing Home and CCG were co-conspirators. I would go further to say that in my and the family’s opinion the Nursing Home and the CCG is egregious in every respect.
A Safeguarding Vulnerable Adults Review meeting was held on the 27 August 2019, Chaired by the Head of Adult Social Services where it was agreed by all attendees that harm had occurred.
As I have stated at the beginning of my Mothers story, the family had full LPOA and EPOA. In our particular experience the CCG and Nursing Home completely ignored and rode roughshod over us when it suited them and regardless of our rights.
To date there has been no acceptance of any responsibility or accountability on the part of any individual or department over the way that my Mother and the family have been treated. At every point, I found that doors are slammed shut. A complete cover up. The family have been treated in a totally uncompassionate and disrespectful way and without any conscience whatsoever.
18 months on and our fight continues for justice and accountability. In January 2020 we submitted a complaint to the CCG. It took them over six months to respond after telling us that they had taken legal advice. Their response was shameful. It was full of denial and defensiveness. We followed their response with a robust rebuttal and have since had one virtual meeting with the CCG’s Head of CHC and another Director. We now have a second virtual meeting with the CCG at the end of this month (February 2021) where we have Care Campaign for the Vulnerable supporting us.
This dreadful system which is not fit for purpose must be challenged and we give our full support to Mr Mathias and his team and we will certainly be making a donation.