ANN HOLDEN – WRITTEN EVIDENCE (ASC0016)
I am submitting this as an individual who has lived experience of adult social care as a Power of Attorney (POA).
Please accept this information which relates to my lived experiences of the parts of health and social care system when I was POA for a friend who was ill and disabled. These date mainly from July 2017 including time he spent in in hospital or in various Nursing Homes. I want to describe to you the manner in which he and his needs were repeatedly ignored and overlooked and the way this affected his health and safety. I also confirm that my experience of the complaints systems in general and safeguarding systems are inadequate, biased against the aggrieved person and there is poor regulation. I believe that the care provision in parts of the NHS and wider care facilities including regulators operate in a culture which is not always safe and incidents are being both concealed and, when challenged denied.
I feel this contributes to the aspect of this inquiry concerned with invisibility of adult social care in that the rights and needs of adults receiving social care are being overlooked and, particularly when there are serious problems these are being left unaddressed and unchallenged and therefore likely to be repeated. Is it as if adults in social care don't matter that much and therefore become invisible.
Although I was not a carer in that I did not provide personal care, I did help my friend with other aspects of his life both when he was living at home, in hopital and in nursing homes. For example I took him to appointments, shopped, did his paperwork, helped him with organisation and represented him at meetings as his unpaid POA. As his health deteriorated I took on the management of his health and finacial matters again as unpaid POA.
I hope you will appreciate from what I say below that most of my time as POA was spent challenging various organisations about their failure to meet his needs. I will say I am only speaking for myself but the degree to which I have been obstructed at times makes me wonder if some people would be driven to giving up and this in turn leads to both them and the person they represent becoming invisible. It will help to supporting paid carers if the the systems to provide and regulate services can be improved as there would be less need to challenge the system and they could spend more time providing care. In this respect if paid carers could be better paid, trained and aquainted with the specified needs of their client this would assist better care and take pressure off unpaid carers.
I am of the opinion that, vulnerable people are at serious risk of neglect in some locations and that there is a lack of challenge by the regulatory authorities. Not once has there been any assessment of what has happened or my friend's best interests when he changed nursing home due to neglect. I believe that problems are being addressed by relocation.
I would like you please, as part of the review of adult social care to urgently look at the way vulnerable people are being treated in some nursing homes and parts of the NHS and particularly in respect of the provision of nutrition and fluids, adequacy and application of care plans and the way complaints are being investigated by the Police and Local Councils and the lack of independent scrutiny of the conduct of regulators.
As part of your review I would like you to please consider the following points. To support my requests I include below a narrative of my experiences and my reasons for making this submission.
1. The funding of health and social care with particular regard to how the 'care' element of nursing care is funded, by whom, under what circumstances and particularly whilst nursing home fees are supported by Continued Health Care Funding. Should this be consistent with what happens in residencies which are not nursing homes?
2. The winter fuel payment element of the benefit system which seem to provide financial support to those who don't need it in their particular circumstances of living in a nursing home whilst supported by Continued Health Care Funding. Could this money be better spent on the provision of care?
3. The pay and conditions and training of staff providing care both in the community and residential accommodation particularly but not limited to the provision of nutrition, hydration, medication, the specific needs of the patient/resident in respect of their medical condition and recognition of human rights.
4. The systems in place in the NHS and wider care system relating to the provision of care with particular reference to food, hydration and medication for patients and residents. In particular abolish the practice of regularly recording "refused" food and drink without consideration of why this is happening and putting strategies in place to remedy the situation. That the practice of distributing medication on the basis of the organisation's timetable alone is abolished and medication is administered on the basis of individual prescriptions. Please see for example the get it one time campaign organised by Parkinson's UK.
5. The role of the regulators of the NHS and wider care provision including the CQC, individual Social Services Departments and the Police and how these regulators are themselves held to account. In particular that the practice of undertaking Safeguarding investigations by only ringing a possible perpetrator is abolished; that investigations are always carried out by examination of relevant documents and interviewing relevant staff; that attempting to conclude a Safeguarding investigation without including the aggrieved person or, in cases where they are too ill to properly participate in the process, their representative, is recognised for what it is - a form of institutional abuse in itself and is abolished. To look at the training and qualifications of staff engaged in conducting Safeguarding investigations. Also the role of the Police when conducting investigations into alleged abuse by neglect and if there is a general policy of automatically referring complaints to Social Services Departments?
6. The accountability of regulators in general and in particular why do complaints to the IOPC about the actions of the conduct of a constabulary/individual police officers automatically result in the same organisation and sometimes even the same officers examining their own conduct? How does this reflect the wider consideration of the needs of people who may be considered vulnerable in some way and, does it lead to their circumstances being regularly ignored or bushed off? Who is holding the Police and Crime Commissioners to account for their conduct both in holding Chief Constable's to account and that of their own staff?
7 Review the structure of the complaints systems which generally require the complainant to only provide an initial account of their concerns but otherwise generally excludes them from further participation and in particular there is little provision for meetings.
8. Are there any or adequate systems in place for learning from previous problems both within and between organisations and if so, why are they not working and, if not, can they be provided? Please look for example and the number of investigations there have been and are being conducted into the NHS.
9 Is there the political will to address concerns about the care system in general and is this why I have experienced the matters I outline below?
Here is some information about my friend's circumstances.
My friend was diagnosed with social anxiety, Parkinson's and Parkinson's related dementia. His conditions left home with limited vision and difficulty judging distances which also added to mobility problems and he had serious problems relating to the side effects of medication. He was managing reasonably well with help including care visits at home. In July 2017 he suffered a stroke as he was too I'll to return home he moved into Nursing residential care. By 2018 he was/had become:-
Affected by long term incurable physical and mental health conditions, immobile, officially recorded as being at high risk of malnutrition, blind on one side and a limited field of vision, had a history of urine infections, recorded more than once in the care plan produced by nursing home staff as lacking capacity and unable to anticipate or meet his own needs and totally dependent on others to do so (although the care plan is out of date in some respects). Unable to feed/hydrate himself. Known to experience intermittent problems with swallowing and paralysis and side effects of medication. Potentially recovering from/affected by at least, earlier incidents at the nursing homes involving falls and urine infections - please see below. In the full time care of the State delivered by the NHS and outsourced at the time to the nursing home who were paid to provide safe, effective , full time, 24/7 professional nursing and care to him.
His history whilst either in hospital and two sequential nursing homes is mainly one of neglect and concealment of neglect and failure of regulators to properly investigate and hold those responsible to account. Consequently I will say there is also no pressure to improveand they are they failing in their obligations towards people at risk and therefore themselves contributing to exploitation.
I have approached a number of politicians about my concerns but generally there is little political will to address them.
There is little if any choice when needing hospital attention or accommodation in a nursing home. When not properly cared for and/or neglected people like my friend who are so ill they look after their own needs and can't return home are trapped in a cycle of deterioration.
Here are some examples.
Abuse by neglect in hospital: NHS and the provision of food.
In March 2015 a public inquiry into deaths and injuries into a University Hospital NHS Foundation Trust includes comments such as:-
"serious failure in clinical care, avoidable harm, pattern of failure, denial any problem existed, missed opportunities to intervene and involving almost every level of this part of our NHS. Repeated failure to examine adverse events properly, to be open and honest with those who suffered, and to learn so as to prevent recurrence."
Just over 2 years later in the same hospital on a different ward I found this when I went to visit my friend at a time when he was in hospital recovering from a Stroke
I walked on to the ward in afternoon visiting time and found my friend to be motionless in bed resting on his right side. The right side of his face was pink and the left side white and I believe therefore he had been left unattended or unassisted in that position for some time. His eyes were half shut and his mouth open. At first glance I thought he was dead. A member of staff was sat a few feet away from him apparently unaware of his condition and certainly not offering him any help. When I called her to assist she said words to the effect of he needs to sit up and helped him into a chair with assistance from another member of staff. He was limp. When I asked when had he last eaten I was told he did not eat his breakfast and had been too grumpy to eat at lunch time. So, no food for the best part of a day I will say. When I asked if he was grumpy due to lack of food I received no reply. When I explained about the needs to ensure adequate nutrition to facilitate recovery I was told people can't be forced to eat and offered the opportunity to speak with the ward manager at the end of the visiting period. My friend was not offered anything to eat by the staff during this period. He did however have some food of his own in his locker which I gave to him. I attempted to take up the chance to speak with the Ward Manager but found her to be unavailable when I went to locate her and had to ring up later. I tried to locate a consultant and was told none available as it's Sunday. The day after I spoke with the consultant's secretary and then with the man himself the following day. Only the last of these events appear in the notes I have been provided with by the NHS ,the incident itself is not recorded at all, there are however some notes to suggest this was not an isolated event. Had I not walked onto the ward at that particular time and witnessed what I did then no one would have known.
I intervened to help my friend by remonstrating with staff from nurse through to consultant and taking food in almost daily until the date of discharge about 3 weeks later.
You may think the Trust would be concerned to know what went wrong here and put it right especially under the circumstances but that's not what I found. Instead, on 2018 I received a letter in response to my complaint written by the Director of Governance on behalf of the CEO which says they had conducted a thorough investigation and were satisfied they had "provided suitable and comprehensive rehabilitation and treatment following his stroke."
Repeated attempts over a 9 month period to secure the records of my friend's food consumption legitimately through a subject access request including letters to, and a meeting with the Chief Executive of the Trust in June 2021, have not resulted in them being provided. This part of the request has been repeatedly ignored and at one time I was told they did not exist having previously been told by the Director of Governance that they did.
At the time of writing this the University Hospital NHS Trust is once again in special measures quoted in a local newspaper on 20.8.21 as:-
"Inspectors were not assured that all patients on the stroke pathway received care and treatment in a timely way, exposing patients to the risk of harm. In light of this, the ratings for medical care including care for older people were suspended."
I question then if, the issues identified in 2015 even now been taken up over the whole of the Trust who were in my experience or maybe still are, still repeating the same errors albeit on a different ward. Even if they have managed to address the issue of patients being helped with nutrition in the intervening time period, I will say the culture of denial and obstruction identified in 2015 still existed in 2017/18 and may well still do so.
I will also say that attempts to address my concerns with the current administration have not fared any better. Following the Trust's attempted denial, two letters sent personally to the SoS in 2018 including and offer to call down to London to see him and discuss the problems I had encountered, resulted in a reply from someone else but no help or commitment to put things right. Currently a letter to the present SoS remains unanswered.
I would like you please, as part of the review of adult social care to urgently look at the way vulnerable people are being treated and the quality of care being provided in hospital/care system and particularly in respect of the provision of nutrition and fluids. I would particularly like to ask that the policy of recording a person's repeated failure to eat/drink as 'refused' and doing nothing to discover why they are not eating/drinking either at all or not sufficiently well to keep them healthy is stopped once and for all. In its place I would like you to ensure suitable help and treatment is provided.
Safeguarding investigations and their regulation.
My friend left his first nursing home after only 3 months residency with a life changing injury.
This is connected to a fall. The extent to which he had been falling (10 in 3 months) was concealed until after his last fall as was the content of recommendations in his care plan designed to mitigate the chance of and effects of a fall which were never implemented.
The CQC initially attempted to direct the Safeguarding complaint I made into a routine inspection. When I objected, the CQC attempted to deal with he complaint by ringing the manager of the care home and accepting her explanation with no further investigation.
The County Council Social Services department were similarly superficial in their initial Safeguarding investigation. Initially they attempted to interview my friend alone when he was in hospital recovering from his operation. Discovering he lacked capacity to be interviewed, no attempt was made to secure him representation and they too attempted to conclude their investigation by ringing the nursing home manager. This was concealed for months whilst I took the matter up by way of formal complaint including to the Ombudsman.
The Council finally got on with the investigation 12 months or so after the event and a belated examination of the records confirmed that there were not enough staff on duty to cater for everyones' needs and that relevant elements of his care plan had not been implemented.
In his second nursing home he was left for 7 months without prescribed food supplements because for some reason which has never been ascertained ( including during the conduct of two Safeguarding investigations into this matter), the staff did not get round to delivering it, notwithstanding written and verbal reminders from the dietitian. This was concealed for months. He was also incorrectly diagnosed with organ failure by his GP and given between days and weeks to live. On this basis I agreed to a DNACPR as I was assured any form of attempted resuscitation would be futile. He did survive this incident. He did no have organ failure but a urine infection for which there had been a delay in treatment due to late delivery of antibiotics. This was also concealed for months and, the GP told me from her when she examined him. The County Council Social Services department initially tried to deal with two Safeguarding concerns by brushing one off and investigating the second by again attempting to interview my friend when he did not have capacity, not getting him any representation and only dealing with nursing home staff. This was concealed for months. When I got hold of the Safeguarding report it contained information about a named third party, amongst other things I had to ask who the report was about. Both Safeguarding investigations had to be repeated.
From time to time there were other issues at this second nursing home connected with inappropriate administration of his medication; a review of the DNACPR which he was excluded from and again, concealed for months; an assessment conducted without notification which had to be repeated; removed from a waiting list for a medical assessment without his consent or notification; one instance of dog excrement on the dining room floor whilst a meal was being served.
Having had no satisfactory outcome to the Safeguarding investigations, I decided it would be safer to look for alternative accommodation. I was in the process of arranging this when he was rushed to hospital in a coma due to acute dehydration and another untreated infection.
Triage documents at the time he arrived in Casualty confirm his condition as being "very urgent" needing to go "straight to resus" and a measured GCS score of 8 which, according to the NHS website, means they he was likely to be in a coma. I spent the day with him in Casualty whilst they rehydrated him and gave him antibiotics for an untreated infection. He left with a new DNACPR in place. I spent the night on the floor in his bedroom.
I made a formal complaint of abuse by neglect to the relevant Chief Constable on the 12/2/2020 expecting it would be professionally investigated.
There was some attention paid to my complaint but I would not call it an investigation and I have made a number of approaches to various officers to try and resolve this. I can give examples of emails and letters which have not been replied to some dating back well into 2020. I have an email stating the police were going to get expert medical advice but this was never done. Also I was promised an email explaining in detail why the matter would not progress further but I never received it.
The Police response to my complaint is basically this; they obtained witness statements from the paramedic who took my friend to hospital and from a doctor at the hospital (his statement is partly factually incorrect) neither of whom were present at the nursing home over the weekend in question (or at any other relevant time as far as I know), accepted their assurances that they had no concerns about the nursing home and, on that basis decided not to proceed further. It's the equivalent of investigating a road accident by taking and relying exclusively on assurances from people who were not there at the time of the event but failing to get information from the victim, witnesses to the event and even the vehicle driver.
In October 2020 I was advised to submit a right to review to the Police and Crime Commissioner for the Police and it took them until February 2021 to reply including advising me to get my own legal advice. I did so and my solicitor advised that all reasonable lines of enquiry had not been followed and that the Police should start again and attend to this and should do as they earlier confirmed they would and get independent medical advice.
I wrote to the Chief Constable, the Police and Crime Commissioner on 27.5.2021 explaining I had taken their advice and sought independent legal advice of my own and, detailing the results of my efforts and requesting they start again as above. Initially the claimed that they gave me this specific advice in case I wanted to seek a judicial review which is a lie. At the time of writing I have had no reply to this letter nor others. I have complained about this being ignored. Initially the Police stated they had not been able to locate receipt of the letter at the time of dealing with the complaint (November 2021) even though I have confirmation they received it in the previous May. The Police and Crime Commissioner's response is that it has not been 'ignored' as it was reviewed in October 2021 by one of the Police officers already involved, in fact, one of the officers whose conduct I have complained about already.
Currently this is with the IOPC for the second time. Previous attempts to get the IOPC to investigate have resulted the the same police force and in some cases the same officers reviewing themselves.
I have written to the current Home Secretary requesting that the role of IOPC is changed so that they have more powers to investigate complaints about the Police rather than just referring the complaint back to the same Police force so they can investigate themselves. So far I have not received a reply. I feel the system as it stands is inherently corrupt and supports the lack of investigation into alleged neglect which in turn is driving standards down.
To what extent should a person pay for their own nursing care?
When my friend lived at home he was eligible for winter fuel payments, accessed medical care as normal through the NHS and he paid for personal care in the form of daily care visits. After he went into residential care he qualified for continued health care funding and paid no nursing care fees at all. He still qualified for winter fuel payments even though he was not paying any heating bills. I rang the benefits department more than once to explain this but was always told he was entitled to this benefit.
By this stage in his life he had no dependents and, after he sold his house no liabilities. His pension entitlement continued of course and as I was managing his money for him I was putting his pension directly into savings accounts which formed part of his estate when he died. In effect the NHS and benefit system were subsidising his estate.
I know not everyone will be in this position but I don't expect he was unique. I used to wonder if he and others in the same financial situation were able to contribute from their income, into the care element of their nursing home fees would this help to finance better care in the form of more staff or better trained staff? Could it have made a difference to the care he received by reducing the possibility of the neglect he endured. For example, could there have been staff employed specifically to deal with nutrition and hydration and have the time to sit with people for as long as it takes for them to eat a meal? Could there be better monitoring of a person's state of health and how this is affecting their ability to take in food and drink? For example, if my friend was struggling to eat a meal provided in hospital could he have been given a different diet for example given a fortified liquid meal for a time? When I intervened I was giving him Complan which he was able to take and liked.
I would like this to be considered please as part of your review.
Although I have been very critical of the care my friend endured in some places, I do recognise that the provision of care is a difficult job and a very important one. During my time as POA I have spoken to a number of carers who have told me that they don't get paid for the time they spend travelling between clients; that they get a 10 minute break during shifts but don't get paid during these break times; that they don't always know about the medical conditions associated with their clients. I'm also aware that it is widely reported that care workers are relatively poorly paid.
I would like you please to examine if this can be addressed so that carers are given properly remuneration within a career structure and given access to training so they can better understand and meet the needs of their clients.
A note about the organisations themselves.
Last year I gave written evidence to a parliamentary committee concerned with Human Rights about my concerns. In my evidence I named the organisations I am concerned about. When my evidence was published I was informed that the names would not be redacted and, for that reason I have refrained from naming the orgainstions in the body of this submission. They are Morecambe Bay NHS Trust, Lancashire Constabulary, the Police and Crime Commissioner for Lancashire, Lancashire County Council and to a lesser extent Cumbria County Council. If you too do not want to disclose this particular information then I will accept your judgment. Alternatively if you wish to approach the organisations concerned I am prepared to justify what I say about them.
11 May 2022