The following text, ref EVESCARX, provides extracts from the eleven page document detailing Robin's mother's two year care history leading up to her discharge from Battle Hospital Reading into Holyport Lodge Nursing Home on 18 November 2002. Copies of the full document, ref EVESCARE.RTF were provided before 18 November to people including Evelyn's family, Anju Bhatti of Wokingham Social Services, Marilyn Sayle, Matron of Holyport Lodge, and others including Derek Cole, Robin's legal adviser. Since 18 November the full report has been made available to others on a "need to know" basis. The full report covers subjects such as the quality of care provided while Evelyn was at home, and this reduced copy has been edited to remove material not relevant to the issue of the NHS paying 100% of Holyport Lodge costs under Coughlan. Please note that, at the time of this document being written, Robin was unaware that the advice he had received from Social Services was unlawful. However, this document does record that Robin Reserved All Rights regarding who pays the Holyport Lodge fees, after hearing the BBC Radio 4 News broadcast on 10th November.
Robin Lovelock, Son of Evelyn Lovelock
7 February 2003
Preface
This document, prepared by Robin with help from Sally Campion, Eve's daughter, puts on record the history of their mother's care over the past two years. It was prepared quickly, in early November, when it was seen there was a need for it. Robin apologizes now for any inaccuracy, and welcomes feedback for future issues if they are needed.
What does this document contain ?
Why produce this document ? Who will see this document ? A
Special "Thankyou".
Others Involved. Robin and Sally. The Early Years. First Problems
in 2000.
January 2001 : 2 Weeks of Angelwatch. February 2001 & Carewell
Take Over.
Battle Hospital from August 2002. Access to Medical Records.
Eve's Medical Problems.
Eve's Medications. The Immediate Future - The Alternatives.
When the Money Runs Out.
Benefits and Form Filling. Recent News Headlines. Holyport
Lodge.
Supporting Documents. Useful Telephone Numbers.
Why produce this document ?
There are several reasons why this document was produced:
Who will see this document ?
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A Special "Thankyou"
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Others Involved
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Robin and Sally
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The Early Years
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First Problems in 2000
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January 2001 : 2 Weeks of Angelwatch
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February 2001 & Carewell Take Over
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Battle Hospital from August 2002
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Access to Medical Records
It is obviously important, as explained above, that there are clear instructions on what medications Eve is on, and that these instructions are followed. It is also important, particularly when a number of individuals are involved, that a simple and clear record is kept as the medications are given. e.g. a recognizable mark or signature with time.
It would seem prudent for everyone to have at least one trusted individual empowered to check that the file being used for their day-to-day care is correct.
Robin and Sally have attempted to check Eve's file themselves, particularly regarding medications, since it appears noone else was doing this reliably. Castle Wards refusal for Sally and Robin to be granted routine sight of the file resulted in letters being written to request this permission formally. Jacky Mannery, Castle Ward Clerk, suggested Robin contact Sue Humphry at the Medical Records Office on 0118 9877057. Following Sue's advice, on 5th September a letter prepared by Robin, understood and signed by Eve, was sent to Stefanie Seigne, Legal Service Manager, Royal Berkshire Hospital. However, after weeks of delay and untidy correspondence, it became clear that no procedure exists for such a simple grant of access: the forms offered by Ms Seigne, even if properly completed and signed, ceased to apply after discharge, and only covered the jurisdiction of the Reading Hospitals. i.e. they would be of no use when they are most needed - on admission to a new ward or hospital, such as Wexham Park or Heatherwood - nearer to Holyport Lodge.
All we have at present is the letter signed by Eve and witnessed by Barbara Pollard. Maybe in time we will find out how to obtain suitable access when it is needed.
Eve's Medical Problems
The following is a non-expert summary by Robin,
but is believed to be more complete than that seen in recent handwritten
pages from Battle Hospital. This text was reviewed by Dr Ali Albayati
and Dr Van Wyk at a meeting in Ward Sister Fogerty's office at
1345 Tuesday 12th November 2002.
THIS IS NOT A SUBSTITUTE FOR THE MEDICAL FILE.
"Patient Confidentiality" is often given as the reason why information, such as this below for Eve, is now kept hidden and may be difficult to access. Patient notes, kept at the end of the bed in earlier years, are now filed seperately- and risks them not being used as they should by nursing staff. "Secrecy" can often hide bad or sloppy practise in any field - and so we believe it is in Eve's best interest for this material to be openly provided here.
At the time of this being written we are seeking clarification of a 3 page handwritten note from Dr Ali Albayati left with Eve for Robin and Sally on Friday 8th November. This is believed to be a rough draft of the discharge letter requested in Robins letter to Castle Ward dated 5th November. The note mentions something new: Sjogren's Syndrome, but we understand this does not change the fact that Castle Ward consider Eve ready for discharge to a suitable alternative place of care such as Holyport Lodge. Dr Ali also lists
Vasculitis (a skin condition ?) and Hypothyrodism. Holyport Lodge received a single page NURSING TRANSFER SUMMARY from Linda Trott of Castle Ward dated Friday 8 Nov 3:17pm. The fax mentions only "Breathlessness and D.V.T" and not Alzheimers or other conditions. The following is based on what information Robin and Sally have so far:
Eve's most significant medical problem is Alzheimer's. The most obvious effect is her inability to remember events from a few minutes earlier, or to focus on important tasks such as eating her food. This also means that she will be lonely when isolated in her room, since she will forget that she has had visitors just a short while earlier, and she shows little or no interest in things like TV, radio, or reading. Alzheimer's was the only condition on husband Len's death certificate. Other conditions such as depression, increased frailty and immobility are attributed to Alzheimer's. See Aricept below.
Sjogren's Syndrome, only recently mentioned by Dr Ali: what is the significance of this ?
The next most significant condition is Fibrosis Alveolitis. This the slow moving shadow on her lung, also referred to as CFA. Fibrosis Alveolitis was diagnosed years earlier. Eve has always been fearful of this condition since her father died of something similar. Any lung infection such as a cold or 'flu can become a crisis. Treatments include 24 hours/day oxygen and regular scheduled use drugs such as Salmetrol, Flixotide, Salbutamol, and Prednisolone mentioned below.
Deep Vein Thrombosis (DVT or blood clotting) was diagnosed as the cause of her painful and swollen right leg after a fall, when Eve was admitted to Battle Minster Ward in August 2002. See Warfarin below.
Bed Sores - at base of spine: currently believed not broken. also tendendency on heels.
Eve suffers from Arthritis and has had hip replacement surgery twice. See Paracetamol.
Eve's Medications
THIS INFORMATION IS NOT A SUBSTITUTE FOR THE MEDICAL FILE. - however, it may be useful as a double check that the "official" file is correct and is properly understood. This text was reviewed by Dr Ali Albayati and Dr Van Wyk during a meeting in Sister Fogerty's office at 1345 Tuesday 12th November 2002.
Important medications for Eve are believed to include:
Oxygen Concentrator : the Oxygen concentrator supplied under the NHS was a little too noisy to be used in the same room. At home this was conveniently located in an unused adjacent bedroom. No suitable location has been found in Holyport Lodge. Putting the machine outside in a suitable shelter was investigated, but this was not practical: Brick construction considered adequate by the machine supplier would not be acceptable to Holyport Lodge. The only practical solution identified was two machines: one in the bedroom and one in the lounge/dining area. At least one of these (in the bedroom) needs to be quieter. One solution is the Respironix Millenium, hired privately at £100 delivery plus £25 per week, or purchased at £1100. These are NOT available under NHS prescription due to issues of support/spares and complications it would have on existing NHS contracts for this part of the UK. One delivered on 7th November will be tested.
The Immediate Future - The Alternatives
At the time of this document being written, Eve is in Castle Ward, Battle Hospital, Reading, awaiting discharge to Holyport Lodge BUPA Nursing Home. Anju Bhatti, based in Wokingham, is now the assigned Care Manager of Wokingham District Council Social Services. She replaced Emma Gurr, based in Woodley because Anju is in a special unit dealing with those in hospital rather than being cared for in their own home.
Angu's role in the time she has been assigned to Eve is to "assess" her, and provide advice to the family.
Three options were discussed and investigated in recent weeks, while Eve was in Battle:
So far most of the work in searching for, and checking out, local nursing homes has been done by Sally. Social Services have provided the brochure, "Care Choices 2001/2002 BERKSHIRE" with a list of some 50 nursing homes in Berkshire. However, Social Services are discouraged from making recommendations on any particular Homes, and can only provide general advice. e.g. if a home answers that it does accept Social Services level funding, then it would probably mean Eve could stay after the money runs out.
Fosters, very near Eve's home, and owned by Wokingham District Council, was quickly ruled out. Eve had three nights trial in Fosters earlier in the year, but was very unhappy there. Sally and Robin thought the place suitable, at first, but soon realized it was far from ideal. The most obvious problems were (low) temperature and "lack of stimulation". This is most certainly not a criticism of any of the Fosters staff: we think they probably do the best they can. We now understand Fosters would not qualify anyway: it is a "Residential Home" rather than a "Nursing Home".
No alternative solution to Holyport Lodge has been offered or found. Unfortunately the basic cost of £750 per week is above the level that Social Services would be prepared to fund. They can make a contribution for the first 3 months, and then Eve will need to sell her bungalow and live entirely on her savings. The increased savings from the house sale will obviously mean she no longer qualifies for Income Support. There will be some additional costs, such as oxygen machine(s) and increases due in 2004 for Holyport Lodge, and these may be offset by some benefits, yet to be evaluated.
However, after a period yet to be calculated - probably several years - Eve's money will run out, and she will be back into the care of Social Services.
When the Money Runs Out
This has not yet been looked at in detail, but here are a few facts, as best we know:
Reasonable Use of Savings: Robin has asked Anju Bhatti for any written advice available from Wokingham District Council Social Services, or other sources, on what is considered "reasonable" use of Eve's savings, particularly after selling the house. e.g. purchase of quieter oxygen machines, other aids related to her "quality of life", gifts to others, etc. No such written advice appears to be available, and so the family are proceeding as they see fit.
Benefits and Form Filling
It will be important that Eve applies for and obtains the maximum benefits to which she is entitled. It is hoped that Anju Bhatti and the relevant Social Services or Benefits Agency staff can provide assistance with this.
There is some "history" here which explains why Robin wishes these forms - such as requests on behalf of Eve for various types of financial assistance - be done by staff within these organizations, rather than Robin. In short: it is because there are major flaws in the claims forms and procedures used to process the forms. It is more likely that those within these same organizations familiar with the mess will know how to work around it.
Some of the problems experienced with "The Benefit System" may be put down to the fact that these organizations are still in a state of change. Robin understands that the NHS, Benefits Agency and Social Security were one organization only three years ago. Now they have been split up. However, Robin doubts if they performed better before they split.
Prior to 2002 there seemed to be no particular problem with Eve and Lens applications for benefits. They were both on Income Support (or MIG as it is now known). The most glaring example of what should be a simple procedure - being plain "wrong" is that which entitles a widow on Income Support to claim a contribution towards the cost of her husbands funeral. This was discovered following Eve's claim in February. In fact, 100% of such claims will fail, because the system does not consider the widow to be on Income Support after the husband dies. This probably continues to cost the taxpayer untold millions in wasted clerical effort, processing claim forms which will always be rejected.
Robin assisted Eve make the funeral cost claim which was rejected; he then assisted Eve to submit a MIG1 - which was also rejected. After numerous written requests, Mrs Harris of the Benefits Agency based at Princes House Reading, assisted Eve with the MIG1 - which then was accepted. By then the funeral expenses had been settled. Mrs Harris was requested to come back to assist with other claims, but did not respond to this request. On 5th September, Trevor Gowers, who does a similar job of helping pensioners with claim forms visited. He spent some time familiarizing himself with the case, but did not return to progress any of the paperwork.
Recent News Headlines
Two BBC Radio 4 News headlines caught Robin's attention in the past few days:
Robin and Sally will do whatever they believe is in their mothers immediate and longer term best interests. However all rights are reserved on behalf of Eve regarding her care.
Holyport Lodge
We found no better alternative than Holyport Lodge: in fact no other alternative has yet been suggested to us. The only obvious disadvantage is the high cost, including that of privately rented oxygen machines. This means that Eve will need to move again when her money runs out.
However, our hope is that Holyport Lodge will be able to provide a much safer and also more enjoyable environment than both an NHS Hospital and her home in Catalina Close.
This assumes that Eve's "typical day" will not involve being confined alone in her bedroom, but rather she will spend much of her day at least "watching the world go by" in the lounge. We hope that there will be plenty of opportunity to interact with staff and other patients, when she is not being visited by friends and family.
On Monday 11th November Marilyn Sayle, Holyport Lodge Matron, suggested that a single quiet oxygen machine would be sufficient. It could be moved with Eve, from her bedroom into the lounge/dining area. It was not expected to annoy other patients. Marilyn also expressed her satisfaction that she had sufficient information concerning care and medications for Eve: the faxed NURSING TRANSFER SUMMARY from Linda Trott faxed from Castle Ward, and the 3 page handwritten note from Dr Ali given her by Robin. More detailed medical information is available above to assist double-checking of charts, etc.
On Tuesday 12th November Social Services were given the "go ahead" to contract Holyport Lodge, with the required form under covering letter ANJU3.RTF, and it is hoped that Eve will be able to move into Holyport Lodge on Monday 18th November.
Supporting Documents
Useful Telephone Numbers
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