Bear with me, this is going to be a long one. It’s also quite personal, if that makes you uncomfortable you should probably move on.
Tomorrow I’ll be in a meeting with Adult Services Safeguarding, to discuss the results of an investigation prompted by a complaint my mum and myself made to Adult Services about the treatment my father received after being admitted to a psychiatric hospital. This admittance was supposed to be a short period for ‘respite care’ so mum could have a break. It didn’t quite pan out that way. What follows is a copy of the letter I composed for my mum that I thenm sent to Adult Services. It’s pretty long and all the relevant details are in the letter, well…as many as I dared to include… I could have written a lot more; so I won’t write a long preamble..
Names and locations are removed as this is a) still ongoing, and b) I have no desire to point the finger at those who don’t deserve it and some of those who probably do.
I am writing to you with regards to my husband, Mr Kenneth How and the treatment he received at █████████ Psychiatric Hospital at ███████████, after being admitted for an “assessment” in March of 2013. A recent news article about the care patients were receiving at this unit has spurred me to contact you, as there was information in the CQC that disturbed me greatly given the outcome of Kenneth’s stay there.
Ken had been under the care of the Elderly Peoples Mental Welfare team at ███████ for approximately nine months. He was diagnosed with “moderate depression and mild cognitive disorder” and prescribed a range of anti-depressants which seemed to do little to no good.
It’s important to be aware that Ken had been through two operations to remove underarm lymph arrays due to malignant melanoma, and he was suffering from melanoma associated retinopathy, which had a huge impact on his eyesight, at this time he was registered as partially sighted.
After a particularly stressful period at the end of February my daughter and I reached out to the mental welfare team to ask for some respite care, we understood this might be for a couple of weeks but this turned out not to be the case.Ken was admitted to █████████ Ward in █████████ Hospital on 1st March 2013. Although we were reluctant to do this, it seemed a reasonable place. The corridors were carpeted, there was a reception desk and Ken had his own room. It was fairly quiet and he had access to the garden, which we liked as Ken was a keen gardener.
Between the 1st and 15th March I received a phone call to say that they were considering moving Ken to ███████ ward because of inappropriate behaviour; he put his hand out and touched someone, not unusual behaviour for someone who is seriously visually impaired and needs to rely on touch sometimes in an unfamiliar setting. I stated to the person on the phone that he is visually impaired and can only see shapes or colours and would not recognise or see a person, so reaching out is normal behaviour for him to be able to navigate his space.He was transferred to ███████ Ward from █████████ and we were told they suspected he had vascular dementia, and that the facilities on ███████ Ward would be better suited to his needs – ie; that they had decor that was more restive and they had a sensory room.
Please note, the CQC report from November 2013 shows that there was no sensory equipment in use, and the sensory room was being used as a bedroom. So, it’s possible we were either lied to about this, or the doctor who told us this was ignorant of the state of the ward facilities. Ken was at the facility until the beginning of August, and to our knowledge he never received any sensory treatment.
On Monday 8th April 2013 my daughter and I attended an appointment with Dr ████ and her staff. I would not call this a case conference, or indeed a Care Plan. It was at this meeting that we were told, in a not very kindly manner, that Ken was suffering from vascular dementia. We did ask if it was possible that it was brain cancer due to melanoma, but as Ken couldn’t have a successful scan there was no way to tell. Dr ████ based her diagnosis on a CT scan from January 2013. The rest of the meeting was simply the NHS Continuing Healthcare Needs Checklist. At no time did we feel that we were included in any discussion about how Ken would be cared for, or how his needs would be met eg; his visual impairment needs with regards to toileting, personal care and so on. It seemed to be mostly a meeting to check boxes with regards to whether he qualified for funding.
The next ‘case conference’ was attended by my daughter, as I was very ill after spending time in ██████████ ICU and hospital due to suffering from pneumonia and respiratory arrest just days after the April meeting. That meeting was purely to go through the Continuing Healthcare funding diagnosis tool again.
Throughout this period Ken had been declining a little, but was still agile, mobile and chatty most of the time.
On Wednesday 24th July we had another (the last) NHS Continuing Healthcare Needs Checklist meeting.
The meeting was quite long and stressful, and during it we felt that we were being told by the nurse (████████) that we were not qualified or experienced enough to understand Ken’s illness. She told us that “We know him better than you do”, that “you haven’t come to terms with it yet” and “you don’t understand dementia”. With all due respect, while the last statement may have been true, absolutely none of them were delivered with compassion or consideration for just how devastating Ken’s condition was. Also, to understand dementia one would hope that the care system would help us do that, but we were left to flounder and find out information by ourselves.
On Saturday 10th August we went to visit Ken. We had visited two days earlier, but were returning with his sister who he hadn’t seen for many years. She is 79 and travelled quite a long way to see him, and what happened that day was acutely distressing.
Ken had been in ███████ Ward for four months up to this point as they were having trouble finding him a nursing home placement due to him being what they termed as “a wanderer”, meaning he was agile and mobile, and could be a risk to himself and others due to his sight loss and his inability to understand other’s intentions adequately. He was registered blind by this time due to the melanoma, an escalation of his eyesight diagnosis from the point of his admission after my daughter took him to Southampton for an appointment with Professor Lotery’s clinic that was booked before he was admitted.
On the date above we arrived to find him in his room slumped in a hard chair that was flush with his wardrobe, with his left arm jammed between him and the arm of the chair. The young lady with him (who I understood to be a member of the physio team) said they thought he had “a bit of a tummy bug”.
We were unable to get him to speak, his eyes were closed and he was running a temperature, the back of his neck was burning. We noticed his eyes were also quite sticky which made us worry that he might have an infection or sepsis. We flagged his condition to the nurse (████████) who stated “I’m not worried about him, if I was he’d be in A&E”. He was given some paracetamol (which he was unable to swallow) and we left him as the doctor was about to visit.
On Monday 12th August at 6pm we received a phone call from a nurse (████) that Ken had been admitted to ███████████ A&E, and that he would be on the Acute Care Ward. She told us it was “nothing to worry about”. However, when we phoned the hospital they could not guarantee he was not in any danger and indeed when my daughter got there, they would not say if he was likely to survive at all.
Ken was kept in ███████████ hospital on IV antibiotics and fluids until 6th September, when he was released to ███████ Nursing Home. In that time, we were asked if we wanted him resuscitated if he were to stop breathing, we were painfully aware how close we came to losing him then. He was suffering from sepsis and the outcome was not looking good. However, he pulled through to the point where he no longer needed IV fluids and antibiotics after three weeks of having them constantly and was accepted into the aforementioned nursing home.
After the infection he could not verbalise to any real degree apart from the odd word or phrase, he had to be fed pureed food from a teaspoon and had no mobility at all. He was completely bed-bound. From that point on, he had to have everything done for him.
Ken stayed at the ███████ Nursing home until April 6th 2014. He died of “end stage vascular dementia” almost exactly a year after he was diagnosed. Just one year.
We have a number of problems with the care that Ken received while he was at █████████ Hospital, which I will outline here.
In general, while there were one or two care assistants that were very good, there was a serious lack of interaction with Ken (and others) beyond sitting next to them in silence or helping them into a chair.
At this point, I would like to highlight in particular a well built young lady with streaked hair who was kind, and very adept at dealing with Ken’s sensory problems and a younger girl with dark hair and a tattoo on her arm who was also very kind and attentive. Sadly I cannot recall their names, if I could I would say that they are a great example of what “care assistant” means. There was also a male nurse called Paul was very helpful, he had only been working there a couple of days but had already asked us more questions about Ken as a person than anyone previously had so he could better engage with him.
I would like to make some points about Ken’s care and welfare, and the lack of dignity he was afforded:
- We feel that there was a lack of engagement or stimulation to help Ken to hold on to himself. We often found him sat alone, away from other patients or wandering the corridors with no-one to help him navigate. He was almost blind by this point, seeing only shapes and colours.
- Some staff seemed to be unaware of how to deal with his sensory problems. We noted that his drink and biscuit was often left in his room, which would then sit there untouched as he wouldn’t be able to find the drink, or open the biscuit packet to eat them. Dehydration is a serious concern for dementia patients, and as drinks were only served at specific times of the day, missing them could be detrimental to his health. As evidenced by the almost fatal dehydration he was suffering from when he was admitted to ███████████ Main Hospital.
- Ken was often dressed in ‘pool clothes’, although we tried to ensure he had plenty of clothes of his own. We often found him dressed in the pool clothes, and then found his own clothes in his wardrobe. On one occasion we arrived to find he had been dressed in a pair of jeans that were not zipped or buttoned as they were too small, so we had to take him back to his room to change him as he was walking around with his tena pants exposed and not maintaining his dignity in front of other patients.
- Ken’s clothes frequently went missing. Within a few days of him being transferred to ███████ Ward, his shoes disappeared and his dressing gown went missing as well, although it was hanging in his wardrobe undisturbed for a couple of weeks, at least. We understand that items get dropped by the patients, and sometimes other patients will mistakenly take them. But it never seemed to be much of a priority for those items to be located. My daughter searched through the ‘shoe pool’ in the laundry room herself, but was unable to find them. By that point this seemed the least of our problems so we tried to overlook it, plus there were multiple disclaimers about lost property on the walls.
- One would assume that despite the above, clothes suitable to a person’s age and body type would be used if that person’s own clothes were ‘unavailable’. There is a matter of dignity when it comes to clothing, and putting rather loud shell suit bottoms from a clothing pool onto a 74 year old man isn’t really what I would term ‘dignified’.
- There was very little, if any, attempts made to engage or stimulate patients, that we could see. We did take a small personal CD player in for Ken with some talking books on but we were told it might not be a good idea as it would be hard to make sure it stayed in his room. We were told that they could put a ward provided CD player in the room and change the CD when he was attended to, but we never saw any evidence of this.
- There was a radio/CD player in the space near the nurses station at the corridor cross-section but it seemed to be playing Vera Lynn every time we went in. I would be very surprised if the majority of the patients in there had experienced World War II as an adult, unless they are in their very late 70s/80s. It seems rather lazy thinking to assume that they’d all be fond of music from the 30s and 40s.
- The garden was always locked when we visited, unless the patients were outside en masse. And even then, we would find Ken sitting on his own; away from the others. Presumably he wasn’t helped outside, despite being able to walk.
- Staff handovers were conducted in the conservatory, with the door to both this, and the garden locked. While I can appreciate that a handover needs to happen, should it be done in such a way as to deny patients and their visitors the option to sit in the conservatory?
- We were told when Ken was admitted that the garden was a secure area, so why did we always have to ask for it to be opened if we wanted to take him outside, and then have to come back in through the dining room door which would be locked again afterwards?
- Lastly, I would point out that I am seriously concerned about the standard of infection control in ███████ Ward. We were very forward about Ken’s problems with regards to his reduced immune system and the danger that posed him with regards to infection, but I wonder whether we were being listened to at all, given what happened in August of last year.
On one occasion we visited Ken to find a very dirty dressing on a cut to his arm, we had to ask someone to come and change it. He had a lot of bruising to his hands in particular, which worried us as after his lymph array removals he was warned by his cancer care team that even bruises could be a serious problem as he was at such a high risk of infection.
That weekend in August 2013 it took almost three days for them to admit him to A&E when it was obvious to us that he was suffering from an infection the moment we found him slumped in his chair. Yet we were told they thought he had “a tummy bug”.
Ken passed away on April 6th 2014. I have no doubt in my mind that the treatment he received (or lack thereof) at █████████ Hospital accelerated his dementia and hastened his death.
As I said earlier, before the infection that caused him to be admitted to the main hospital he could walk fairly well unaided, he never required a walking frame for example. He could feed himself reasonably well using utensils with encouragement. He could talk and hold conversations, even if they were somewhat disjointed and ‘in the past’.
The main hospital pulled Ken back from the brink, and treated him well and with care. However, after the infection he was only to live another seven months in a bed-bound state, being fed with a teaspoon and unable to form anything resembling a sentence. To reach this state only 18-19 weeks after being admitted to █████████, and only 12 weeks after being diagnosed with dementia is shocking.
I would appreciate a response from you on this matter, Ken’s decline was distressingly fast and we feel that the way he was treated at █████████ Hospital contributed to that to a major degree. Had we been able to help him to hold on to himself a little longer, perhaps his last year of life would not have been so horrendous. We feel that no-one should have to go through this, and finding the CQC report made us realise that other people and their families have been going through similar problems with █████████. It should not happen, and we would not want to see this happen to anyone else.
And that’s it. If you stuck with it this long… thank you. I have more to say, but I should probably put it in another post. Dementia is distressing enough for both the sufferer and the family, but to be let down by the very services that are supposed to help and protect your loved ones is beyond awful. I wish I could say I hope no-one else should suffer the way mum and dad did, but it would probably be a false hope.
A few posts are being added from my anonymous tumblr blog. It was anonymous as I was (trying) to blog about dad’s dementia. I didn’t want to do it in my own name at the time for various reasons, however as it’s not really a secret I’d rather keep everything in one place. Also, at the time I was never really able to keep up with it as a) I had so much going on and b) sadly, dad didn’t live very long after I started the blog.
I doubt I did or ever will say anything useful. But it helps me a little to write it down and focus my thoughts.
It’s been ten days since dad passed away.
I’ve been on a social media blackout, as there hasn’t been much to say.
The funeral is tomorrow, I think I’ll be able to clear my head and carry on a bit better afterwards.
It seems almost impossible that dad could have stayed with us these last three days he’s been on a syringe driver. He has not had any fluid or food, but is looked after really well by the nursing home staff. They check in on us every 30 minutes, give him his mouth care and still change him into his pyjamas at night, and do his personal care. I have nothing but admiration for them. This can’t be an easy job.
I have been listening to him breathe for three days now, and every now and then my heart jumps into my mouth if he pauses.
Dad, I need you to give me a little notice so I can go and get mum. You can’t go without her by your side.
Well, it does really look like I may have to get my thoughts down in very much reverse chronological order.
I am sat next to dad as I type this. He is no longer really in this world, but I don’t want him to die alone or with strangers. So here I sit. Arguably, we are more strangers to him than the people who have looked after him day after day for the last seven months. They assure us that he is calmer when we are here, but I think it’s possible they’re saying that to comfort us, that’s OK. I can understand it.
Dad was put on a syringe driver the night before last. He can no longer take fluid or food in any form, so all they can do is fire up that driver and make him comfortable with morphine. It seems to have worked, he was very distressed in the hours before the syringe was inserted. Now he just lays there with eyes half-open, breathing steadily, snoring occasionally. No-one wants to tell us how long it will take him to die, because no one person is the same. Dehydration is not ideal, but as we are bound by law we cannot help him to go in peace.
Dad would hate this, he would not want it for himself or for us.
He would probably find it amusing that I’m typing away while I’m sat here. He wanted to learn how to use a computer, so we bought him a laptop for his 70th birthday. That was almost five years ago (his birthday is a week this Sunday)… but because his eyesight failed him, he never got to do much more than to play a few levels of Plants vs Zombies and look at some photographs of the dogs.
My life has been consumed with first his cancer, then his dementia, and all that entails. It’s going to seem very quiet soon.