Care for E: safe discharge & care for Dementia patients

02/12/2022

Update regarding the care and treatment of Ivy Evelyn Wilkinson

On 18th November I emailed Gateshead Adult Social Care with a request for clarification of the circumstances surrounding my mother’s admission to Eastwood PIC. The email bounced to a London postcode and I received no response.

She was admitted to Eastwood on 9th November. That afternoon I received two phone calls. The first from an Occupational Therapist who informed me my mother had fallen in her home that morning. It was documented in her “GP record” that the carer present when she fell had phoned me to notify me of this. My phone records can be made available at any time to disprove this.

The OT proceeded to inform me she had carried out a “functional assessment” and my mother, 90 with dementia, was requesting exercises. This is after falling only a few hours prior to the call. The OT informed me a paramedic was present with her and had examined my mother. I was told she did not need to attend hospital.

Later that afternoon a “senior” from Prime Care phoned me to advise that my mother had asked her to call me to inform me she was going into Eastwood for Respite “for a couple of days”. When I asked who had authorised this I was told my mother had done so herself. I was told she had fallen not once but twice that day.

At this point my mother had no named social worker, only an Assessor dealing with her care.
I was given a phone number for Eastwood by the Prime Care worker. The call was ended abruptly as I was told patient transport was outside her house ready to take her.

I was not contacted by Eastwood when she was admitted. I eventually spoke with her on 13th November. As her LPA I requested documentation relating to her social care assessments. I was told by the centre manager she would have to contact her manager “at the civic” as she had never been asked to provide such records previously and wasn’t sure of the process.
I was informed that an Assessor from Gateshead Adult Social Care had admitted my mother. I was told the Assessor had attempted to phone me several times. I have no record of any calls from her.

Despite numerous requests this plan has never been made available to me and at no point was I consulted in any best interest decisions, despite having the legal authority of an LPA for a vulnerable patient who is documented to have dementia.
During this call I gave the centre manager my email and phone number as she told me she did not have it to hand.

During this call I also spoke to my mother who sounded well but could not phone me because she has no recall of my number and no working phone in her room.
I reminded staff she had an appointment with her dementia consultant organised by the Memory Protection Service, Monkwearmouth Hospital, Sunderland, on 22nd November to receive the results of the scan I had taken her to hospital for. They knew nothing about it. I reminded my mother too as she also knew nothing about it.
I then emailed her dementia consultant who did not reply.

On 22nd November I received a short email from a Pathway Co-ordinator at Memory Protection Service, Monkwearmouth Hospital, informing me the appointment with her dementia consultant was taking place that day at Eastwood. The email did not mention my mother by name and referred to her only as “IW”.
I have received no further communication or any documentation regarding this meeting or the results of that scan.
It is my understanding that as an LPA for a person with dementia, and as her next of kin, this would be sent to me as had previously occurred with assessments related to her dementia condition.
That scan on 18th October was crucial in confirming that she has Lewy Body dementia which is the cause of her falls. On the day I took her for the scan I made video with her walking through the hospital, slanting characteristically to one side in her walking pattern. Her concerns about loss of balance and co-ordination have been ongoing for some time. Her falls in the house occurred regularly over a very long period of time until her condition was eventually appropriately identified as Lewy Body dementia.
For this reason it is now imperative to access her medical history.

However also on 22nd November I received another email from Eastwood’s centre manager informing me that a different consultant from Bensham Memory Hub had visited my mother and arranged yet another scan. Again, claims that efforts had been made to contact me are simply not true.
Obviously this conflicting information is utterly confusing. At this point the records of her scan from 18th October must be released to me.

After speaking with my mother’s GP surgery on 25th November I was told an out of hours visit to Eastwood from an ambulance had taken place on 19th November after a fall.
As her daughter I had received no notification of this.
No one informed me that she had required treatment from paramedics and it was only discovered after talking with her GP surgery.

I phoned Eastwood on Wednesday 30th November following a request to provide my mother with self-care products and complained that I had not been informed about a visit to the centre by paramedics to attend my mother.

During this call I was able to speak with my mother who has dementia and was therefore unable to recall a meeting with anyone regarding her dementia diagnosis and unable to tell me anything about a.further scan being arranged.

I was told some of her medications had been removed, including her Codeine painkillers and Amitriptyline.
As a result she was experiencing pain.
These are the medications identified as contributing to her falls risk in a previous OT report.
I explained again that my mother has Lewy Body dementia and this must be addressed as the factor which causes her to fall.

As an LPA acting in her best interests it is now a matter of safeguarding her human rights that my mother receives an independent assessment and diagnosis of dementia.
Records of her scan from 18th October must be released.
My mother’s social care needs assessments must be released.
Documentation relating to her care planning must be released.
Records held by her GP surgery must be released.

Cheryl Wilkinson
2nd December 2022

30/11/2022

A personal statement from Cheryl Wilkinson, 30th November 2022

My mother Ivy Evelyn Wilkinson continues to not have access to care provision which meets her needs. In the absence of legal representation on her behalf she continues to not have access to justice.
I am also denied this same justice despite obvious violations of our rights which occurred in the context of our engagement with Gateshead Council and Gateshead NHS Foundation Trust.
We now also know the law was broken in her discharge planning and subsequent actions to implement a care plan.

All I am able to say at this point is that emails sent to two members of staff at Gateshead Queen Elizabeth Hospital late on the afternoon of 4th November have been accessed 151 times. A mail tracking app established that they were opened in various locations throughout the U.K including WC2N
The same with emails sent to Adult Social Care at Gateshead Council.

As her LPA I continue to be illegally excluded from representing her best interests and I am denied access to her social care assessments which have been requested numerous times.
My mother has dementia and the authority of an LPA should be recognised when requesting this documentation so that I am able to act on her behalf and represent her best interests.
I am currently prevented from doing so.

To request my participation in a process which has been proven to violate the law is to victimise me further and in the absence of any recourse to the legal representation I am entitled to, I am forced to seek assistance from Victim Support.
Other issues related to discrimination against me on the basis of disability and continued harassment on a social media account which seeks justice for a 90 year old dementia patient will be dealt with accordingly.

Yesterday I uploaded this letter which was sent by my MP The Rt Hon Mr Nicholas Brown to Ms Yvonne Ormston MBE, Chief Executive of Gateshead NHS Foundation Trust on 25th October 2022.
As there was no response from Ms Ormston in over a month I felt that it was necessary to remind Ms Ormston of its existence via the Twitter account I use to update the public on my mother’s situation.

The treatment my mother has received from Gateshead NHS Foundation Trust has indeed been egregious. The Trust continues to display disregard and continues to fail to accept accountability for its actions and decisions.

What a sad set of circumstances this is. I do not believe for,one moment that this is representative of our NHS and in guidance documents the NHS itself makes clear this is not acceptable within its processes.
I fear that public confidence in Gateshead NHS Foundation Trust is drastically impacted by this situation which is why a timely resolution is imperative, not only for patients but for all those who may use its services and work in whatever capacity for the Trust.
While I am heartbroken for my mother, I am equally heartbroken for all the young medical students I see every day near where I live, working and studying so hard so that they might one day work in the NHS.
It is my belief that we need to do better for everyone.

Cheryl Wilkinson

17/10/2022

13/10/2022

13/10/2022

The disgrace of my 90 year old mother’s hospital discharge. An NHS fiasco and her careless “social care”.

Check out this Facebook Video designed by dzs8kxpcmv.

13/10/2022

A very sad update to our story which was made public in Newcastle Chronicle Live on Tuesday.
Yesterday afternoon Queen Elizabeth hospital made the unsound decision to discharge my mother to her home.

I spoke to her at around 1.00pm yesterday, and to ward staff, and was not informed that just an hour later she would be officially discharged.
I went to her home to pick up documents for her home insurance and found her sitting in the chair in her living room with two nursing staff present.

The locks on her front and back doors had been broken and replaced.
As there was visible damage to her home from pipes in the kitchen ceiling leaking into her electrical wiring I told those present that she could not stay in the property and had to be taken to a safe place. I asked them to return her to hospital for her own safety.

They phoned the ward and were told by a deputy ward sister they had to leave my mother in her home and go back to the hospital.
This was an absolutely desperate situation and I am astounded that Gateshead NHS Foundation Trust has taken the unprecedented step of placing an elderly patient in a position of direct physical harm to free up a hospital bed.

In no way do I blame the staff who returned her to her home. They did a very good job of caring for her during her admission.

This is a situation where frontline staff, acting on the instructions of ward managers, are put in the impossible position of carrying out the dirty work of administrators. The brutal, filthy work of organisational abuse.

If there was ever a case of dereliction in duty of care we saw it in action today.

As my mother’s carer and her legal attorney I was not consulted at any stage of the decision making process for her discharge planning, with not even the courtesy to contact me and let me know they intended to break the locks to her home.
It’s unbearable to think of her standing outside her home witnessing that.
A 90 year old patient in the care of an NHS hospital, coerced, exploited, and ultimately abandoned.

I found her sitting in the living room, exhausted and in a state of confusion.
Fortunately my neighbour had seen the commotion and came to the house just as I was entering to check that my mother was okay.

She was discharged with no inspection of her home, and hospital staff present were shocked to see the condition of the kitchen pipes.
Despite attempting to communicate risks in her home for weeks to her Discharge Liaison team, they chose not to acknowledge them even after they were informed in writing.

We were unable to establish who would be visiting her to supervise her medication and when a carer later arrived we had to inform her about safety issues in the house which would put her at risk. She informed me she would speak to her manager then left. The fiasco continued when two other carers showed up and were informed that the property is unsafe. They were able to help my mother with medication but this is only a short term solution and contracts managers should not be asking care staff to work under these conditions.

I was not contacted by an allocated social worker and have been unable to establish if she has one. Why is Gateshead Council Adult Social Care failing to meet its statutory responsibilities? No further action had been taken to adequately assess my mother’s needs since 6th September when a discharge decision was made without taking into account her dementia diagnosis which was given to her on the 6th and documented in a report produced on 8th September. Unfortunately the report was ignored.

Feeble responses from “spokespersons” hiding behind anonymity when the welfare of a 90 year old woman is at stake.
It is a sickening state of affairs.
Perhaps we need a freedom of information request to establish whose budget paid for the locksmith to break into her home on her behalf and return her unsafely to a house she no longer recognises.

This did not need to happen. A bed was available for my mother in a Dementia care facility with staff who have the skills to support her full time care needs in a safe environment.
Unfortunately QE ward managers do not have the experience and training to adequately assess those needs, one having publicly announced they ordered five books on dementia but hadn’t read any of them only 10 days before they attended my mother’s discharge planning meeting and informed me they did not need to read the assessment report written by a Dementia specialist consultant.

But I’m very aware that my family are not the only victims of this disaster.
It is happening regularly with the most vulnerable patients never having the opportunity to speak out.

I am very grateful for the public attention my mother’s situation has received and acutely aware now of the hundreds of others who suffer this flawed system in silence.

“Care assessments, care planning and charging for care have been key features of our cases this year and a common theme is councils failing to provide care, or limiting it, and justifying this because of the cost. We appreciate budgets are becoming increasingly stretched but authorities’ duties under the Care Act remain and we will continue to hold authorities to account for what they should be doing rather than what they can afford to do.”

Michael King, Local Government and Social Care Ombudsman
12 October 2022

https://m.facebook.com/story.php?story_fbid=5764019333690625&id=124685800957368

Ivy Evelyn Wilkinson is scared that if she's discharged to her home she could be at serious risk of harm

09/10/2022

Yesterday on Twitter

07/10/2022

Also on Twitter.

07/10/2022

As of yesterday evening my mum was still in hospital.
She is able to talk to me on her bedside phone and tells me she enjoyed her dinner.
I continue to receive no acknowledgment of the emails I sent to her healthcare team over two weeks ago. The. Queen Elizabeth Hospital continues an organisational campaign of silence around my mother’s situation. As her Lasting Power,of Attorney I demand to know who has drawn up a care plan for my mother because on Friday Adult Social Care Direct at Gateshead Council knew nothing of this. And the hospital’s social work team were unable to tell me anything.

My mother has not seen a care plan nor has she agreed to a care package. Whatever was “discussed” with this 90 year old lady took place without the consultation and involvement of a Carer and representative and was not documented.
In view of her limited recall and cognitive impairment she does not grasp what she is asked or what she is told.
She needs to have a Carer present to ensure she understands the decisions she is asked to make are in her best interests.
She has also lost the hearing aids she has to wear in both ears so I’d have to question how any effective communication could take place.

-Three solicitors would like to see evidence of the mental capacity assessment carried out with my mum just in time for her multidisciplinary discharge meeting on 6th September and they would like to know who conducted this assessment because there is an obvious conflict of interest if it was carried out by a member of her discharge planning team.

-They would like to know why discharge nursing staff informed me they didn’t need to consider the Dementia diagnosis given to my mother and did not need to view an assessment report by a Dementia specialist and Consultant Psychiatrist in Elderly Care.

-They would like to know why a Ward Sister disregarded the request of a Dementia Nurse Practitioner to attend meetings regarding my mother’s discharge so that she could support my mother and I.

-They would like to know why a recommendation that another mental capacity assessment should be carried out for my mother by an independent professional -one who is not part of the discharge team~was not actioned.

Under the Care Act all available relevant information including the views of Carers, representatives and specialist consultants must be taken into consideration in discharge planning in order to meet the patient’s continuing needs. How can my mum’s needs be met safely when they don’t even know what those needs are.
Whose best interests is Gateshead NHS Trust acting in?

I think I need to reiterate the responsibilities of Gateshead NHS Foundation Trust under the Care Act 2014.
This is an extract from my formal complaint to the Trust:

“In the discharge planning process you will need to demonstrate that you have carefully considered the impact a discharge to her [my mother’s] home will have on her continued wellbeing, that her care needs (including reference to needs based in Dementia syndrome and falls risk) can be met while she lives alone in her home, and that all risks to my mother have been taken into account.

I remind you again of your responsibility in law:

The Trust will need to give careful consideration to my mother’s needs and rights. Consequently, the Trust will need to be able to put forward clear and compelling evidence to demonstrate the availability and suitability of after-care arrangements to meet my mother’s care needs. The Trust will also need to demonstrate that it has sought to engage as far as possible with my mother and myself and has provided all relevant information to assist my mother and myself in participating in the plan for discharge.”

My mother’s experience is a catastrophic failure on the part of all involved in planning her discharge.

What we need now is a full and thorough independent review of how things have gone so disastrously wrong.

The Queen Elizabeth Hospital needs to hand over the requested documents, respond to serious concerns about a vulnerable elderly patient, and accept accountability for their service errors and unsound planning which put patients at risk.

04/10/2022

This is my mother.
She’s 90 years old, recently diagnosed with Dementia.
Since August she has been a patient in the QE Hospital Gateshead after an emergency admission suffering from Delirium.

Her Dementia-syndrome causes cognitive impairment which means she forgets to eat and take liquids, no longer recognises her home, often can’t tell if it’s day or night and has very little memory of what’s been said to her or what she’s said to others.

She is also identified as a falls risk which means she falls regularly in her home, often two or three times in a day.

Since January I’ve had to live with her in her home as she cannot be left alone, she wanders at night and I had to sleep on the sofa downstairs to prevent her going outside onto a main road in the middle of the night.

She has a two storey house with her bedroom and bathroom upstairs. A recent assessment by an Occupational Therapist noted she wasn’t able to walk up the stairs without assistance, and was at risk of falling when doing so.

After asking for support as her sole carer looking after her 24/7 I was told I was entitled to nothing. My mother has no other family, friends or neighbours to help look after her so I have been doing this on my own until I was told I would need a hip replacement and due to stress my own GP told me the situation was harming my health and could not continue.

Then in August her condition got much worse and she wasn’t eating or sleeping and falling two or three times a night in her bedroom.

On advice of the Memory Protection Service I was told I had to take her to A & E.
She was admitted to the QE Gateshead and found to lack mental capacity on admission.

I tried to explain to ward and hospital staff that my mother cannot be discharged back to her home because she needs full time care in a residential home. There is no way to ensure her safety at home and a care package will not meet her needs. Even with adaptations in her home she is still at risk living alone.

I also informed them about the condition of her house which has water leaking from pipes in the kitchen into the electrical wiring.

As her Lasting Power of Attorney I believed I would be consulted in decisions relating to her health and welfare but when they wanted to discharge her back to her home the multidisciplinary hospital team responsible for her care assessed her as having capacity-although she is very confused and often has no idea she’s even in hospital- so they can disregard my input about what is in her best interests and Gateshead Adult Social Care can avoid funding the care home place she desperately needs.

This situation has been ongoing since August causing her and I incredible distress.
She has signed her own written statement and handed it to those who are supposed to be caring for her in hospital to tell them she is very worried that she will not be able to cope living alone, her home is unsafe to live in, and she is at serious risk if she is discharged back there.

The QE Hospital Gateshead NHS Trust and its staff have made unsafe and unsound decisions in planning to return my mother to her home.
I have tried many times to explain the challenges she faces and my emails to ward managers and discharge staff have not even been acknowledged.

I have been refused copies of mental capacity and care assessments carried out for my mother and the hospital will not tell me who was responsible for carrying out these assessments. They tell me they will have to seek legal advice, even though I am her carer and representative with legal authority as her LPA.
There is an obvious conflict of interest if assessments are carried out by members of her discharge team. That is what we’re trying to find out at the moment.

The Discharge Liaison nurse has carried out meetings with my mother without me present as her representative and she has repeatedly been asked “how she feels about going home” despite her home presenting a risk to her safety and well-being.

Then on Thursday 27th September another meeting took place with her. I did not know about this until Friday evening.
She was given a Notification of Discharge letter by the same Discharge Liaison nurse and a service line manager.
The letter is not in compliance with any official discharge documents and doesn’t even have her NHS number or hospital ID.

Coercive behaviour was applied in encouraging her to return to an unsafe property without any care plan in place that can meet her serious level of need.
In the letter it is stated a locksmith can be found to break the locks on her front door so she can be returned to her unsafe home.

Imagine how utterly confused she was and how upset this has made her.

I have had to sit by helplessly knowing all this is occurring and my only recourse is to make a formal complaint to the hospital Trust. I have done so then I’m informed the complaint will be investigated by the same member of staff who handed her the Discharge Notification letter.

The situation has now been reported to the Care Quality Commission regarding serious errors in the discharge planning process which have put my mother’s welfare at risk while the hospital acts in its own best interests to free up beds, disregarding the safety of its patients.

Senior managers in Adult Social Care, Gateshead Council, have been put on notice of an imminent critical safeguarding incident if my mother is returned to her home.

I will be campaigning for a fully independent investigation into how this could happen to a vulnerable woman in a place where she expects to be treated with dignity, and how the NHS Trust can justify these errors in process and judgement which are putting her at immediate serious risk.

As of today my mother remains in hospital and could be discharged at any moment.

It is my belief that the processes and practices of healthcare staff at QE Hospital Gateshead are unsafe, unlawful under the Care Act 2014 and are endangering vulnerable patients, many with communication difficulties which are exploited in the knowledge they cannot speak for themselves.

This could be anyone’s mother.