Patience a virtue?

Patience may well be a virtue but it may also tarnish your spirit.

This blog of mine has been silent for many months now, because I was patiently waiting and hoping that Care UK might just find it possible to be as virtuous as my patience has been since 2007.  Sadly, I now know that is not to be.  I waited and hoped in vain.  Foolishly, I gave the benefit of the doubt to Care UK.  Back in 2007 when I allowed my relative to be placed into one of its care homes, I placed my trust in Care UK.

From when my relative died, then through all the investigations and reports written by the Local Authority – with input from all and sundry –  and right through to the end of the hearings at the NMC in 2013, I continued to trust.  After the conclusion of those NMC hearings, with two nurses being struck off the NMC register, and two more having serious conditions imposed on their ability to continue working in this country as nurses, I asked Care UK to do the decent thing.  We entered into what began as meaningful and purposeful correspondence.

Since then, I have been passed around like the proverbial parcel.  Kicked about like a football.  I lost count of the number of times the goalposts were repositioned again and again. I’ve been bounced from Care UK to solicitors to financial bigheads to insurance policies, then back to bigheads and even bigger heads.

Care UK has shown itself to me to be a business stripped of humanity.

Fortunately, over the last year or so, I’ve been able to put my thoughts and feelings into another blog – far removed from this one, and not on Care UK’s radar, as this one has been.  But over the last few weeks and months, I’ve received so many kind comments about this particular blog, that I have decided to return to it and to resurrect it.

I’ll be back soon.

Thoughts on diabetics’ access to blood glucose strips being restricted

A timely reminder appeared on the BBC website today in the form of this piece bearing the title Diabetics’ access to blood glucose test strips ‘restricted’, which led me to the Diabetes UK report Access to test strips – A postcode lottery? (Aug 2013) .  The Daily Record from your short time in Care UK’s Lennox House care home featured heavily at the NMC hearings that started in February 2012 and concluded in April 2013.

One entry in the Daily Records was a strange entry, written almost as a post-script afterthought once you’d been admitted to hospital in a diabetic coma.

That entry (unsigned, by the way) gives the results of a urine test, and alongside is bracketed the following: “There was no available glucose strip since the GP does not prescribe according to Deputy Manager & Home Manager”.

Does that not appear to be a peculiar entry in a record of care?  It almost looks like an attempt to validate the absence of care.  The full urine test results were indeed alarming.  I’m not a medic but it didn’t take me long to work out which parts of the results should have rung bells.  But the care home didn’t find them sufficiently alarming to call an ambulance, because they waited  another 15 hours before doing so, by which time you were in a desperate state, with spasms lasting nearly half an hour noted hours before an ambulance was called.

When I arrived in A&E, soon after your arrival there, I was asked to explain how your diabetes had come to be ‘so out of control’.  I didn’t know that it was out of control, of course, but the hospital for some reason thought that you lived with me and that I was responsible for your care.  Not so.

When I asked the manager to explain to me what that entry in the Daily Record meant, she said that the GP refused to prescribe test strips for the care home, and that Care UK also refused to supply them.  That’s the point at which I offered to pay for a full year’s supply for the care home so that no other person would suffer the way you did.

During the investigation into what happened with your care, the investigators were told that test strips had been bought from a well-known chain of chemists – but no evidence could be found to support that.  Not even a petty cash record.

However, at the hearings at the NMC, there were other and different rationales put forward.  One proposed by the manager was that your diabetes was ‘diet controlled’ and not medication-controlled.  Not so.  When she saw you, allegedly just before she left the building, you were “warm and pink” and you gave no indication of distress, pain or suffering.  What a shame she didn’t have the time to act on your urine test result, that she was surely informed of before leaving the building.

You were not in a position to monitor your own glucose levels.  Vascular dementia made that impossible for you, and in any case your previous GP (not the one providing services to Lennox House) had monitored you regularly, as had your clinic appointment regime.  You never missed an appointment.  It was the responsibility of the care home to monitor your diabetes – that’s what care homes are supposed to do.  Care.

Another memory has been brought forward by today’s reports.  The GMC (General Medical Council) was informed by the GP involved that she had no knowledge that you had diabetes, and that had she known she would have carried out the required test and had you admitted to hospital.  The NMC was told a very different story by the nurses involved, namely that the GP had indeed been informed of your diabetes when she visited you (and prescribed an antibiotic for a suspected UTI).  They can’t all be right, can they?

Again at the NMC hearings, mention was made by the manager and other nurses and their representatives  that there had been no training in diabetes at Lennox House, before your arrival there.  It was even said that there was no specific training in diabetes given for a couple of years after your death.  Not so.  Would nurses never have heard of  Hyperosmolar Hyperglycaemic State (HHS)  (previously called  Hyperglycaemic Hyperosmolar Non-ketotic Coma (HONK) or  Diabetic Ketoacidosis  (DKA) ?

Diabetes UK calls the restricting of access to test strips a lottery.  You definitely did not win the lottery in Care UK’s Lennox House care home where your diabetes was neither monitored nor tested, whether by strip or by other means.

Barbara Young, Diabetes UK Chief Executive,  said “Rationing test strips to save money does not make any sense, because  it is putting people at increased risk of complications that are hugely expensive to treat.”

You’d be a fool to argue with that.

I sincerely hope that Home Secretary Theresa May, recently diagnosed with diabetes, will not find her access restricted.  If she does have that experience, she will no doubt take steps to ensure the restrictions are lifted.

Care UK regrets they weren’t able to care for you, madam

With apologies and thanks to Cole Porter and Ella Fitzgerald, two of your favourites.

Care UK regrets they weren’t able to care for you, madam.

Care UK regrets they weren’t able to care for you.

They can’t even apologise.

Best they can do is  just general regret, madam.

Care UK regrets they weren’t able to care for you.

“Care UK strives to provide appropriate care for all their residents across the various services that they run.”  Allegedly.

“It is always a matter of regret if a service is not provided as they would wish.”   Allegedly.

Apparently I “clearly consider that there were failings in the care provided” to you.  I most certainly do, and I’m not alone in that opinion.

Care UK’s solicitor has been asked “to pass on their regret in respect of this”.

Care UK has been made aware of the fact that Catherine Igbokwe and Sheila Ali have both been struck off the register by the NMC (Nursing and Midwifery Council) for misconduct and for failing you miserably, and that Maria Rholyn Secuya (nee Baquerfo) has received a 3 year caution order for misconduct and for failing you miserably, and that Dahlia Dela Cerna (nee Enriquez) has received a 2 year caution order for misconduct and for failing you miserably.

Care UK can only  come up with an expression of general regret, via a third party at that.  General regret is overworked these days.

Care UK promised to provide a substantial sum in your memory, acknowledging that it failed miserably to provide care to you, and so that we would be able to establish what Care UK’s then Managing Director of Residential Care called “a positive contribution to the world of dementia”. In your memory.   Care UK has now broken that promise.  How foolish we were to place our trust in Care UK.

Care in the UK makes progress

Last week saw the final stage of the hearings, at one of numerous NMC locations that have hosted the fitness-to-practise procedures, into the lack of nursing care provided to you during the time you were in Lennox House care home, Holloway/Islington, in 2007, and just before your death.  Appropriately enough, we were directly opposite the Old Bailey for the finale.

Over the main entrance to the Old Bailey, which opened in 1907, figures were placed representing fortitude, the recording angel, and truth, along with the inscription

“DEFEND THE CHILDREN OF THE POOR & PUNISH THE WRONGDOER”

As I sat in the hearing room on the 5th floor of the building,  those words were directly in front of my eyes all week.

On 17th April 2013, Sheila Ali the former care home manager / nurse  was struck off; her name is removed from the register of nurses allowed to provide nursing care to people.   She wasn’t present to hear the decision because, overnight, she decided suddenly to withdraw from the proceedings, and to remove her instructions from the barrister who had represented her.  When he announced this to the hearing, he was invited to leave.  He left.  So neither of them was present to hear the decision.

On 19th April 2013, Dahlia Dela Cerna/Enriquez wept as she received a 2-year caution order, having been found guilty of misconduct and with current impairment.  That’s the first time she’s shown anything that resembled human emotion.  They have all shown callous disregard for you – and for me.

On 21st December 2012, Catherine Igbokwe was struck off,  having been found guilty of misconduct and with current impairment, so her name was removed from the register.

On 21st December 2012, Maria Rholyn Secuya/Baquerfo received a 3-year caution order, having been found guilty of misconduct and with current impairment.

The documents in the above links are very long but very detailed.  Words I’ve heard used to describe the hearings include ‘complex’, ‘extremely involved’, ‘complicated’ and ‘very difficult’.  The decision documents are just that too.  Presumably to deter people from reading them in full, and in detail.

After you died, over 5 years ago in December 2007, there were lots of investigations and reports written, some of which I have never been allowed to see.   No matter how hard I’ve tried, the words written have all been kept behind closed doors, far away from the eyes of those who cared about you.  We, your family, have never been granted access to the full reports of the investigations by Islington local authority.

It was on 1st October 2008 that I first referred these nurses to the NMC.  The hearings at the NMC began on 6th February 2012 and concluded almost 15 months later  on 19th April 2013.  Once I had been called as a witness and had given my evidence, I attended every single day as an Observer.  So I observed and heard every single word spoken in public.

Needless to say, I’ve heard things said that I have never known about.  I never knew before now, for example, that the care home manager Sheila Ali had been in Lennox House all day on 7 December 2007 without bothering to come to see you or to dial 999, even though she had apparently been alerted to the fact that you were in spasm for long periods, unable to speak, unable to swallow, unable to move.   She didn’t care.

She didn’t care much for those residents mentioned in this article in the Daily Mail in August 2008, bearing the gruesome title ‘Care home boss suspended after dead bodies of two pensioners ‘are left for days’.  That was 8 months after you’d died.

It goes without saying that there were many other revelations at the hearings too.  No wonder we have never been allowed the full knowledge of your last days.

It’s been extremely difficult for me to sit through those sessions, but I owed that to you and I had to represent you.  It was the only thing I could do on your behalf and in in your absence.  Your voice was taken from you by  Care UK and its so-called care home, Lennox House.

I’ve found it hard to be told, by the legal representatives of the nurses involved, “You have no need to be here” – “These proceedings are nothing to do with you” – “You are not involved in these proceedings”, and so on.  I had every need to be there; the proceedings had much to do with me and with you; I will always remain involved.  There’s more I have to tell, and tell it I will.  Honestly, openly and transparently.

They took away your voice.  Nobody took away my presence.

Care Circus is back in town next week

Well, here we go again.

Next week the Care Circus is back in town.

The latest batch of NMC hearings is about to stir its loins again and get on with the work that it was charged with handling long ago on 1 October 2008.  That was only a few very short months after you died, thanks to the rubbish care that came your way, courtesy of Care UK and Lennox House so-called care home in Islington, London.

It was also a few very short months after I’d asked so many questions of Islington’s Mental Health Care of Older People team, and then Islington’s Social Services, and then the CQC (or CSCI as it was called back at the beginning of 2008), and the Coroner’s Office, and Islington’s Safeguarding of Vulnerable Adults Team, and  most of all of Care UK … well, you will know how many questions I asked of them all, each and every one of them.

They don’t like answering questions, do they?  Especially if those demanding but necessary questions are likely to cast a very dim and dark shadow over their (lack of) accomplishments.

Last December 2012, the NMC decided that one nurse involved in your demise should be struck off, from their register of nurses allowed to nurse in the UK.  Another nurse was delivered a 3 year caution order, requiring her to be on her best behaviour.

Next week, 15 to 19 April 2013,  the Circus is back in town.  Fifteen months after the NMC hearings first started, looking in depth at the circumstances surrounding your rapid decline, within 10 days of arrival in that so-called care home, Lennox House, and your admission to hospital in a diabetic coma.  You died 3 weeks later.

The  final 2 cases, still waiting in the wings, are to be dealt with by the NMC next week.

One case  is that of the care home manager, who is mid-way through an interim 9 months suspension order, placed to allow time for her to seek permission for a Judicial Review in the High Court, of the NMC decisions thus far.  The High Court refused permission to seek a Judicial Review.

The clowns will all be wearing their costumes.  Their faces will all be heavily disguised beneath the cake of their make-up.  They will all have their props to support them.  Their scripts will all have been written, re-written and then written again.  Edited, heavily edited, and then edited again.

You weren’t allowed to write a script of  your own, were you?  Let alone edit it.

The script of your final years, months and weeks of your life was snatched from you.  Grabbed by thugs.  The uncaring, unqualified, untrained, unmonitored, unsupervised, unsuitable thugs who were charged with the most basic and fairly simple duty of looking after you.

Next week, they will still be wearing their masks, their costumes  and their heavy make-up.

As they will continue to do year after year.  Uncaring as always.  Unkind in their presentation thus far.  Unwilling to admit that they failed miserably in their duty of care to you, for you and about you.  They didn’t care enough to care.

The chance to wear your dresses, your gentle make-up and to present your smiling face to the world was taken from you.  By the thugs of care.  The thieves of care.  The robbers of care.

HOT Care in the UK

The Francis Report calls for a ‘legal duty of candour’.  He mentioned honesty, transparency and openness too.

He may well have stolen my term for exactly the same kind of care that he’s calling for.

HOT Care.

I’ve been calling for HOT care for more than 7  years now.  As have those affected directly by the Stafford Hospital.  Cure the NHS.  Cure the Care too.

HONEST +  OPEN + TRANSPARENT = HOT

I first used the acronym HOT in my correspondence with Islington Local Authority’s Mental Health Care of Older People team, circa 2005 and many times thereafter.  I’ve called for that same HOT Care in each of my communications with Care UK since 2007 when my relative suffered at the hands of such cold care courtesy of Care UK.

Could we now find a way to move towards HOT Care in the UK?

Is it so impossible for us to expect/demand/require HOT Care?

Care in the UK – 5 years on – Part 5

The day of your funeral arrived.   It took place late on a cold and dark January afternoon.  It was always destined to be a quiet occasion because you had outlived most of your relatives and friends, so it was to be just a small family affair.  The Service was elegant and personal, with a sprinkling of your good humour and more than a dash of our family history.

Your unexpected and sudden admission to hospital and death there had caused us enormous pain.  We knew by now that there would be a full investigation into the circumstances surrounding your admission to hospital within 10 days of arriving in the care home.  We had hoped to have the time and space for our last farewells to you at the funeral.  We were not even allowed that.  Care UK chose to intrude again in death as it had done in your life.

The Service ended and we followed the Minister out of the Chapel, only to see two people sat right at the back.  The care home manager and another person had chosen to invite themselves to your funeral.  Representing the care home Lennox House and the care provider Care UK  that had failed to care for you.

One of your family had already told the manager that she would not receive a warm welcome at the funeral, so it was disturbing to see that she chose to ignore that advice and that request not to attend.  The Minister spent quite some time talking with us all before he departed, as we stood outside, almost in the darkness, looking at the floral tributes.  Strange though it seemed at the time and strange though it still seems to us, the care home manager went to her car to get her mobile phone and took photographs of some of the flowers that had been designed to reflect part of  your origins.  You’ll know the images I’m talking about here.

Little did we realise though that her motivation for attending your funeral went far beyond the usual reasons for attending a funeral, albeit uninvited and unwelcome.

You remember that ‘Complaints Form’ that I mentioned here before?  The one that allegedly came into being on 31.12.2007 when we chanced to bump into the manager at Lennox House.  Well, after the funeral service  the manager must have driven at speed back to the office, where she signed off the Complaints Form at 18:00 hours, with the words “Resolved” and making references to things that were allegedly said at the funeral.  The form indicates that no further investigation would be required by Care UK as the complaint had been ‘resolved’.  Wrong, wrong and wrong again.

The same Complaints Form made reference to things that she could not possibly have known then, because even we didn’t know then some of the things mentioned on this form and we were the first to know them, later.  Nobody else knew these facts then when the Complaints Form is supposed to have been created and completed.  Contemporaneous?  I doubt it.

But we didn’t know about all of this until July 2008.

Almost her parting words as she left the cemetery, the manager said again “We’ve taken steps to ensure that this kind of thing never happens to anybody else”.  The same words she’d used twice before and said to me on 31.12.2007.    They resemble those oft-used but empty words “lessons have been learned”.  Except that the lessons are never learned well enough to ensure that this never happens again.

I wanted to say to her that – while I could appreciate the benefits others would undoubtedly derive from those steps – they  are steps that should have been taken long before you arrived in that care home.  They’re the most basic elements of care, fundamental to a place that calls itself a ‘care home’.   The elementary fundamentals of care.  Without them being firmly in place, nobody has the right to use the words ‘care home’.

The Investigation would take its course, I said, so we should wait for that before making any comments on it all.  It was a funeral, after all, so everyone was polite, as you would expect of us.  We didn’t know then that there would be two Investigations, both of which revealed much of the same, but with one revealing far more than the other,  including many of the most basic lessons that needed still to be learned.

You only had one chance in that care home.

You deserved better care.

(To be continued)

Care in the UK – 5 years on – Part 4

The next days were spent making arrangements for your funeral. 

I began to follow up some of the questions I’d already asked in mid-December 2007 of the Mental Health Care of Older People Team, part of Camden and Islington NHS / Mental Health and Social Care Trust.  Their social worker wrote to me the day before the funeral to inform me that she’d no longer be the allocated worker, but that her Deputy Manager would be coordinating the “on-going enquiry” into the circumstances leading to your admission to hospital. There was to be a comprehensive investigation under their Adult Protection Procedures.  I asked to be allowed to attend all meetings and to receive a copy of the Report of the Investigation.  The Deputy Manager of the MHCOP team said she didn’t envisage any problems with that request; she knew by then that I’d want and need to stay fully involved.

I’d contacted CSCI (now the CQC) on 20 December 2007, while you were still alive,  to tell them of my concerns about your care, or rather lack of it.  It took them a while to find the right department dealing with Lennox House.  CSCI had not been notified of your sudden admission to hospital on 8 December 2007,  so the inspector I spoke to said they would write to the manager of Lennox House and to me.  I heard nothing back from CSCI, so I phoned them again on 21 January 2008,  to be told that CSCI had indeed written to the manager after my phone call and that they’d received a call back from her to say that she would reply in due course. 

But CSCI  received no response from her, so they contacted her again on 21 January 2008.  That’s when I first discovered that the manager told CSCI, that very day,  that she had ‘arranged’ a meeting with me on 31 December 2007 (as I mentioned here) and that all my ‘concerns had been ironed out’ at that so-called meeting.  That is far from the truth.

Your social worker had a few busy days too, round about 20/21.12.2007, and when I received a copy of your notes (much later in February 2008) I was able to know more.  According to the notes, she’d apparently tried to phone me so many times but had never been able to reach me or to leave a message for me.  Strangely enough, many other people had managed to do just that.  I knew nothing of Adult Protection Procedures or the ‘Form AP2’ that was completed then.  Islington’s Adult Protection Coordinator was busy too, but I did manage to speak with her just the once. 

When I received your notes, sent to me on 12 February 2008, I read that the Adult Protection Coordinator had advised your social worker on 2 January 2008 – well before the funeral – that your family had the right “to request an inquest, though MHCOP would not do this”.    (They are the exact words used in the social worker’s notes.)

Why is it, do you think, that absolutely nobody at all cared enough to pass that vital piece of information to your family?  Not one person told us that we had the right “to request an inquest, though MHCOP would not do this”.  

MHCOP (Mental Health Care of Older People) were well aware that there were serious concerns about the lack of care provided to you by Care UK’s so-called care home Lennox House. 

But nobody cared enough about you or your family to tell us that we had that basic human right.  There were a few other things noted that they could have transmitted to your family too, but nobody cared enough to tell us.  In the best interests of whom was that decision made to withhold vital information from us?

According to the notes, MCHOP were faffing around trying to work out whether there was anybody available in MHCOP with the ‘capacity to conduct an investigation’.  Not wishing to be facetious, but I do wonder whether they meant the ‘mental capacity’ or the ‘physical capacity’ to conduct an investigation.  In the event, an Independent Nurse Consultant was commissioned by MHCOP to carry out the investigation and to write a Report.

The social worker signed off on 8 January 2008 and departed by writing that she would no longer be involved in your case as “the only remaining work is the completion of the POVA enquiry”.  POVA was the Protection of Vulnerable Adults.

You deserved better care.

(To be continued)

 

 

Care in the UK – 5 years on – Part 3

This day five years ago, 31 December 2007, was a difficult one for many reasons.  I know that you won’t wish me to go into the detail of some of those reasons here.

We drove to London again and spent 4 hours at the Whittington Hospital dealing with various formalities. Most of the morning we spent in the PALS office (Patient Advice and Liaison Service) and talking on the phone with the Coroner’s Office and with one of the hospital doctors involved in your care.  We grabbed a coffee and  left at about 1 o’clock, having decided that we did not want to have to return to that part of London again in the near future.

That’s why we went – on the spur of the moment, unplanned and unannounced – to Lennox House to collect your belongings and avoid the need to go back there again.  While you were still alive, just, I’d already asked the manager to send me a copy of everything on your records.   On 20 December 2007 I received a copy of a document that Care UK calls the ‘Daily Record’ .  It was only 9 pages so I asked the manager to copy and send everything else.  It was the only document I’d seen then, but it gave a good indication of the very days when you must have been desperate for help, but no indication of any help being given.

We parked the car and were able to walk straight into Lennox House.  So much for security.  The manager was at reception, but she didn’t recognise us.  She’d only met us once before,  back in August 2007 when we went on a recce to Lennox House, just one of the care homes we looked at.  There was no reason she should have recognised us.  I introduced myself and explained that we’d come to collect your belongings.  She said she’d just been speaking with your niece on the phone and she was planning to collect your things.  It was easier for us to do it there and then, as that niece doesn’t drive.  She also said that she was just writing a note to me, to accompany the paperwork I had asked for.  I said I’d take it all with me and save her the trouble of posting it.

We went to your room, and packed your things; a few were missing, especially two rings.  I asked for them – but I was assured you had not had any rings on your fingers when you arrived in Lennox House.  It was an uncomfortable thing to hear, because we ‘d bought one of those rings, the ruby ring, for your 80th birthday.  The sapphire and diamond ring had been on your finger for the last 60 years –  more years than I care to remember.  I’d noticed you were wearing both rings when we last saw you there, in November.  Eventually, the staff managed to come up with one of the rings.  The other one never surfaced.

We went down to reception.  I was asked to go into the manager’s office, while “His Lordship” as you always called him took your things to the car, before returning.  In that office, I was subjected to an inquisition.  I was expected to go through every single line of the Daily Record and explain my concerns to the manager, as she wrote alterations on the pages.  I thought I’d already done that on the phone earlier in December, but I still had to go through it all again.  It became impossible for me, and I left the office in tears saying I just couldn’t go on with it.  We had spent 4 hours at the Whittington Hospital, and I was exhausted.

I told the manager much of what we’d been through when you were in hospital, including being asked to explain how your diabetes was so out of control.  I’d already spoken with the GP who hadn’t bothered to look at the meds you were taking, when she’d been called to the home, and who told me she was not aware that you were a diabetic.  If she had been given a list of the meds you were taking it would have been obvious to her that you were a diabetic.  If one of the nurses had told the GP you were a diabetic, she might have treated you differently.   (She’d never met you before, as you were new to the care home and new to the surgery providing services to that care home.)  Interestingly, it was only from that Daily Record that I discovered the GP had spoken with Lennox House (on 14 December 2007, while you were in hospital) before she returned my call to her that day.

The manager told me that there were no available glucose strips in that home,  because the GP does not prescribe them.  The manager told me that Care UK wouldn’t provide them either.  To say that I was shocked, again, would be an understatement.  I volunteered to pay for a year’s supply so that no other person with diabetes would ever arrive in A&E in a diabetic coma, like you did.  With much of your bloods and tests ‘deranged’ .

I’m still trying to work out why those same words about glucose strips being unavailable are written in your care home notes, in the Daily Record for 7 December 2007.  It’s such a strange few lines to have been added to someone’s personal care record.  After all, you weren’t the only resident with diabetes, so  it strikes me as a very strange addition to your records.  Contemporaneous?  I doubt it.

The manager said “we have taken steps to make sure this never happens again”.

That was too late for you.  You only had one chance.

What I didn’t know until much later (namely July 2008)  was that a ‘Complaints Form’ came into being on this day, five years ago.  Its purpose was to indicate that ‘a meeting had been arranged’ to discuss my concerns, all of which appear to have been resolved that very day.  I learned from CSCI (Commission for Social Care Inspection) that a ‘meeting had been arranged’ this day, 5 years ago, to discuss my concerns.   It must be the first ‘meeting’ where people stood to ‘discuss’, rather than sat comfortably.   CSCI asked for a copy of the minutes of that meeting.  CSCI is now the CQC (Care Quality Commission).  There were no minutes – because it was not a meeting.  It was a chance encounter.   (More about this all another time.)

I left Lennox House in tears.  This day 5 years ago.

You deserved better care.

(To be continued)

Care in the UK – 5 years on – Part 1

Five years to the day after you died, I am now able to tell the world of the circumstances surrounding your sad death.  I’ve had to keep it fairly close to my heart for reasons that will become obvious.

You arrived at Lennox House, a so-called care home provided by so-called care provider Care UK, in Islington/Holloway, London on 28 November 2007, having spent the previous 4 months incarcerated (against my will, and against your will too) in a hellhole of an assessment unit.  Your vascular dementia was too challenging for all but you.  The extra-care sheltered housing recommended as eminently suitable for you was eminently unsuitable for everyone, with or without dementia.  Thanks to the Notting Hill Housing Group, and thanks also to Islington Council’s commissioning department who didn’t seem to know what they’d commissioned.

So, within a year of what they called ‘independent living’ but which was, in reality, ‘independent dying’, we were persuaded to agree to you and all your needs being assessed.  How wrong we were.  But we had no way of knowing, of course, that the social worker was not being HOT – honest, open and transparent.  Your needs weren’t assessed at all.  You were merely drugged up to the eyeballs, to keep you controlled.  Within 3 months – when even a couple of the staff asked us why you were there, when you were so lively, cheerful and chatty, even though you quite rightly wanted to get out of the place – you became a gibbering idiot.  We were given the big refusal when we asked what medications you were being given that could have had such a dramatic impact on you, in just a few weeks.  We persevered and discovered that you were on Buprenorphine, an opioid painkiller.  That was one hell of a kick in the teeth, for you; you’d only ever taken paracetamol before to deal with your back pain.  But your back pain turned out to be osteoporosis.  So I extend my thanks to your GPs who never bothered to look further than their noses, until we insisted on further investigation.  Not that it was severe enough for that kind of painkiller.

Then along came Amitryptiline, alongside the Buprenorphine,  and they worked their evil on you.   There was nothing we could do.  Nobody would listen to us.

We wanted to move you away from that assessment unit.  I told the social worker in August 2007 that if they kept you there for long, you would die. I wasn’t far wrong, was I? But the social worker knew best, even though she’d only known you for months of your 83 years. Aided and abetted by her superiors, kept you there, until such time as the Mental Capacity Act came into full force on 1 October 2007.  We were told that if we didn’t like the decision made – by a show of hands at a ward meeting to which we were not even invited, but people who’d met you only once were able to show their vote – we could do the other: take it to the Court of Protection.  Thanks here to Doug Wilson, Phoebe Masso and a few others who were all involved in this strange kind of decision-making in their best interests, but not in your best interests..   We started to fill in all the appropriate forms for the Court of Protection.

We couldn’t bear to see you suffer.  So we agreed to your move to Lennox House so-called care home, so called state-of-the-art ‘flagship’ care home, the way forward for dementia care.  You arrived there, in the nursing section, on 28 November 2007, awaiting a bed in the residential section.  Your needs were then not for nursing care.  Still upstanding, still able to ask us questions, still able to say that you wanted to go home.  But it was clear to us that we would never be able to achieve that for you.  We spent the first few days with you, hoping that you’d settle and be able to regain your strength, and the fighting spirit you’d shown all your life.  83 years and a bit of a great life.

We phoned daily and were told you were settling in well; walking the corridors – that was your normal, as someone who could never sit still for long.  Always doing something, always on the move, always active.

Ten days later, at 0915 on Saturday 8 December 2007, we received a phone call telling us that you’d been admitted to the Whittington Hospital’s A&E department, as you were in spasm, had a possible seizure, and that you were needing oxygen “and we can’t give her oxygen here”.  That’s what Lennox House told us.  Before we left home to head for London, I took another phone call.  This time from the Whittington doctor, telling me that we would have to make serious decisions about the degree of intervention they should take.  The A&E Consultant told me that you were unlikely to live beyond that day.

He didn’t know you, though.  You managed to cling to life for another 3 weeks, before giving up your fight.  Before you lost your fight, I began asking questions as to what on earth could have happened in the 7 days since I saw you last.

I first asked the Alzheimer’s Society for help when I first realised that something had gone seriously wrong.  They refused me any assistance at all, saying that they didn’t get involved in this “kind of thing”.  I explained that I wasn’t asking them to get involved, just to point me in the direction of help and support.  That’s what I understood the Alzheimer’s Society to be all about.  But I didn’t know then as much as I know now about the Alzheimer’s Society’s  close connections to local authorities, and to care providers.  Nor had I then been told by a couple of the Alzheimer’s Society’s representatives that they thought I was what they called a troll, who had never had any connections with dementia, with social services, with care homes, and so on.  They have continued with that kind of unkind care too.  So I extend my thanks to the Alzheimer’s Society for showing me that they don’t really care.

I decided to go it alone from then on, expecting no support from anyone, but accepting any support that came my way.  For the support that came, I will be forever grateful.  As for the support refused or contorted by lies, I will be forever perplexed.

It’s taken me 5 years to get answers to some but by no means all of my questions.  Many will never be answered because people in positions of power seem not to understand those little HOT words: honest, open and transparent.  I’ve never heard so many untruths told.  And still being told too, after all this time.  So it’s not over yet.

Two separate investigations have taken place into the circumstances surrounding your neglect in care, with 2 very different reports emerging from them.

Last week, the NMC made some decisions, about the staff employed by Care UK and working then at Lennox House.

Catherine Igbokwe was struck off by the NMC.   She will never do to others what she did to you.

Maria Rholyn Secuya (nee Baquerfo) was given a 3 year caution order by the NMC.  She will have to be on her best behaviour.

Sheila Ali, the care home manager/nurse, is challenging the decision made thus far by the NMC, so her barrister has decided to seek approval for a Judicial Review. In the interim, she has a 9 month suspension order – but that may change.

The case of Dahlia Dela  Cerna (nee Enriquez) has been adjourned until next year.

This is all available on the NMC website of Hearings/Outcomes for 17 to 21 December 2012.  Available here in the public domain.

As are these two articles that appeared in the press:

8 August 2008 – Daily Mail article here.  “Care home boss suspended after dead bodies of two pensioners ‘are left for days’.”

Yesterday, 28 December 2012 – Islington Gazette article by Meyrem Hussein here.  “Pensioner ‘is left in agony for days’ at Holloway care home”.

So, that’s where I’ve got to, five years to the day after your departure from this world.

You deserved better care.

(To be continued)