25th June 2014 – I have just posted a petition with 38 Degrees for Health Secretary Jeremy Hunt to review and amend the NHS National Framework for Continuing and Nursing Care. This is to hopefully stop thousands of eligible patients having to pay for their NHS Care – please sign it and pass it on if you can!
In 2005, Peggy was admitted to a care home after suffering with Spino-Cerebellar Ataxia Type 6 for several years. Much like many thousands of elderly people, she sold her house, cashed in every penny she owned and duly began paying her care home fees.
She did this for over 8 years without complaint as her condition deteriorated. She ended up completely paralysed, unable to speak, doubly incontinent, being fed puree from a spoon and drinking from a baby cup. She also developed dementia. She passed away in February 2014 weighing 6 stone, having lost nearly half of her body weight.
My Aunt’s need was very clearly based on one of health-care need and not social care for which the NHS is financially responsible according to law. To this day, despite fighting for Peggy’s right to funded nursing care totalling over £180,000, not a penny has been paid by the NHS through the South Norfolk Clinical Commissioning Group.
Out of sheer desperation and anger at the injustice the NHS and ultimately our government is inflicting on people, (purely because they are elderly and an easy target), I have set up this blog. If just one person in a position of influence gets to read it, I will be happy. This scandal must be stopped.
And please, God bless my Great Aunt – the kindest, most gentle individual you could ever meet who has been treated so badly by the very system put in place to help her and others like her.
It began like this…
I had never heard of NHS funded Continuing Care until a couple of years ago when I read and article in the Sunday Telegraph by a solicitor who specialised in fighting for patients being denied their right to funded care.
So, I delved further and soon discovered that if someone’s need for care is based on health and not social care, that the NHS is obliged to fund this. This was a curious state of affairs as my Aunt had been sent to a care home for exactly this reason in 2005. She was referred by a GP and Social Worker from Norfolk County Council, and at no point was there mention of an assessment being carried out to see if she was eligible for NHS funded care.
Instead, we were told that her financial situation meant she would have to pay to be looked after. Her house duly went on the market and she began to pay what has now totalled over £180,000 to get the care she was entitled to, for free, from the NHS.
In September 2012, I wrote to the then Norfolk Primary Care Trust requesting that Peggy be assessed for NHS funded Continuing Care as she was clearly entitled to this according to the law. This is where the catalogue of feebleness and incompetence began. In fact, it has been so bad that it could form the basis of an entire comedy series.
So many people employed in so many buildings, none knowing their rectums from their elbows, the purpose of their own existences or anyone else’s in the same office. It’s all very Kafkaesque.
The only respite they get from this situation is when it takes nearly a year for them to reply to a letter because they have been reorganised into another department and given a new name. What are they doing all this time? Who knows….
Please note: this is only done to delay things and make you more likely to go away and stop bothering them. With me it hasn’t worked. It has merely made me more angry and determined. Own goal to Norfolk PCT.
20th November 2012 – I received a call from Peggy’s care home asking if I want to attend a nursing assessment the following morning. Both my Mother and I assumed this to be the annual care-plan review and my Mother agreed to attend a 10.30 meeting the next day.
21st November 2012 – On her arrival at the care home, my Mother was met by a nurse who informed her she had already completed a checklist and that my Aunt’s condition wasn’t severe enough to qualify for a further assessment and she duly handed over a pre-signed letter to this effect. Nothing my Mother told the nurse about Peggy’s condition was recorded by the nurse. All this was in contravention of the NHS Framework.
The Checklist had been completed:
- Without the PCT informing me first
- Without my Aunt being represented by anyone, (at this point she was unable to speak)
- Before my Mother had even arrived to attend the meeting
Strangely, the nurse in question maintained she had a conversation with Peggy about her condition and care – a conversation that no-one else on the planet could have as she was unable to speak clearly enough to be understood. She clearly has amazing healing abilities.
The same slippery nurse then asked my Mother to sign a form to say she had, ‘been out’, so she could keep her records in order. My Mother duly obliged, unaware that the said nurse had completely flouted the NHS National Framework she was supposed to adhere to.
Unwittingly, my Mother had signed a document stating that the Checklist had been completed properly and her input had been noted as part of the decision – a decision already made by the nurse before my Mother had even arrived for the assessment! Very slippery indeed.
The abuse of procedure in this instance led to my Aunt not being given a fair Checklist assessment and being denied a full assessment to which she was clearly entitled. This happens to many people – they manage to arrange a Checklist to be completed only to have it botched through incompetence or craftiness on the part of the assessor.
21st November 2012 – Formal complaint made by my Solicitor to Norfolk PCT about the conduct of the nurse and her non-adherence to the NHS National Framework together with a request for another Checklist to be completed.
Awaiting a reply. wonder how long it will take…..?
20th March 2013 – Reply received from Sheila Bremner at Norfolk PCT. (Apparently staff changes within the Trust have meant a delay in replying).
In reality – the person responsible for dealing with the reply has probably gone on extended sick leave whilst everyone else sits and reads Hello Magazine and orders shoes from ASOS.
Norfolk PCT refuse to undertake another Checklist for my Aunt. They maintain they have evidence of a signature that the Checklist was completed in the presence of a family member.
My dying Aunt is denied a full assessment and therefore has to continue paying for her care.
18th April 2013 – a witness statement from both myself and my Mother are sent by my solicitor to Norfolk PCT. Details the events of the botched Checklist and the PCT’s failure to act according to their framework together with another request for a new Checklist to be completed.
29th October – a reply finally!
However, this time the reason for the delay was because someone has filed the paperwork from my complaint in the ‘problem solved’ file.
The reality – Hello Magazine lady had shown the statements to a manager who thought the best way to make me go away would be to ignore me. For six months. No, no, indeed. This has merely fuelled my anger whilst my now 7 stone Aunt lies dying in a plastic-coated armchair being spoon-fed liquidised pie and gravy. (But very nice pie and gravy I have to say).
Here is the irony – if I were to put my little dying Aunt in the car, drive her to the nearest hospital and dump her outside in a wheelchair, she would have been nursed, washed, toileted, fed etc. without question and without having to sell her house for the benefit.
Her bed sores would be dressed, she would be turned every hour to prevent further sores, she would be given antibiotics to stop her constant chest infections, and her dementia would be treated as an illness . This is what nursing care is andin a hospital enviroment the NHS pays for it.
It is also required by law to pay for that care if it takes place in the home or care home. Nursing care is nursing care and a primary healthcare need requires nursing care. Norfolk PCT/CCG have denied my Aunt this.
Core principles of the NHS, (from www.nhs.gov)
- that it be free at the point of delivery
- that it be based on clinical need, not ability to pay
Not in my Aunt’s case. They saw her coming.
Of course I would never put my Aunt in a car and dump her off at a hospital – but it does just go to show that because my Aunt was admitted to a care home and her condition not recognised as being a primary healthcare need, she has slipped through the net and since been taken advantage of by the NHS.