A Bit Much For A Sunday Morning But


Registered User
Aug 23, 2005
I hope you won't mind me asking for your thoughts on the notes below - a bit (lot) garbled but if you could just plough through and try to understand what the situation is I would be grateful.
Basically, recent review was held by B&nes on Thursday last week - outcome hopefully known in 2 weeks, but I owe Nursing Home lots for 3 months care and I've had enough!
Would I be stupid to reply to the HCC request for signature along the lines at bottom of my notes do you think?
I just can't keep this all in my head for much longer - it affects when and how often I visit my Mum as I don't want to be confronted by the Home for the money - have gone through all of this so many times before and just dug deeper into my savings, can't do that anymore.
I don't want Mum moved as she's 'settled' ...............

If you could get back to me you may be able to offer some 'wise' words PLEASE!
NOTES: The week before last I received a copy of HCC “Arrangement for purchase of Service for Residential/Nursing Care” dated 7 April 2008 with a compliment slip asking me to ‘Please sign where indicated and return’.***
This document is for the purchase of RESIDENTIAL services commencing 1/4/08 until further notice.
Section 2:Type of Arrangement: Long Stay until further notice (Permanent Funding including Trial Periods). Out of county rate of £438 for authorisation (if applicable)
Section 3: Financial Details – Code 2a (from the ‘Form of Maximum Funding Level Schedule’ appendix 3)
Description: OP-Res. Very Dep DE/MD Prem. Long Stay-Ind. Spot Very Dep
Maximum Level: £62.58 per unit of Service (ie per day)
For long stay does the Client agree to pay the Client Contribution direct to the Service Provider (ie that Section 26 (3A) National Assistance Act 1948 shall apply)? NO
Person responsible for client contribution: Is left blank!

Section 4 – Chargeable Items and 3rd Party Payments
Third Party Payment (see conditions) Name, Amount and Frequency is left blank.

Section 5c – Third Party Contributor Details – Names me.

The Care Home have signed this form – on 17 April.

Last Thursday – B&NES Continuing Health Care Review Meeting
Review period 30 May 2006 – to date
(Criteria already met for period 3 December 2004 – 7 August 2005)
1st time this Area PCT have had anything to do with the NHS Continuing Health Care case.
I told them and gave evidence that:
1) Mum’s primary need is a Health need – andit has been since before she was admitted to Hospital and diagnosed with AD on 5 April 2004.
2) The judge’s comments in the Grogan Case clearly state that the crucial test is whether or not the person’s needs are primarily health care needs and that he was keen to point out that it was difficult to imagine a situation in which a dementia patient would NOT have primarily a health care need and that as such a care package is way beyond the remit of Social Services.
3) This review process has been ongoing since September 2005 and that I do not believe the current Needs Portrayal documentation and Continuing Healthcare Assessment are entirely accurate.

I presented evidence that:
12 March 2004 - Specialist Registrar visit – lo in mood and depressed, not sleeping, early morning wakening, had CPN and support worker visiting regularly in her flat. Memory had deteriorated, scored 23/30 on cognitive testing, commenced on antidepressant and had regular support from community staff. Problems with compliance, referred to Day Hospital for further support. Continued to struggle at home and admitted to hospital as flat in mood, talking about wanting to end it all and complaining of headaches in morning. Commenced on Aricept* and her antidepressants* increased. Quite clear er memory was failing her. Diagnosis of senile dementia of the AD type. At discharge planning meeting, concerns that she would need a lot of support. Her insight into her problems was limited, she did not understand the support that she needed. Family and staff involved in her care agreed that she needed residential care. While waiting for this placement Mum became very upset and agitated, irritable and tearful and wanted to go home though she did not know where that was. Refused to stay in hospital and was very unrealistic and not able to identify the risks. Held under Section 5(2) of MHA. Reviewed after 72 hours.** Dr stated that she had little understanding of her abilities, confused and did not have insight into this and therefore needed supervision and prompting.
At this stage took Mum home to live temporarily with her sister until placement was ready.

July 2004 – Letter from Consultant in Old Age Psychiatry confirming that Mum needs to live where is able to be cared for 24 hours.


July 2005 – Given notice from Residential Care home – following numerous times when she went missing; and after an intense search with Police being called in.

Mum’s mobility is poor due to need for Replacement Knee – put off due to her mental health condition!


RNCC Determinations since 16 Feb 06 – have all been medium.
I pointed out that these stated: judged to have multiple care needs, which will require the intervention of a registered nurse on at least a daily basis and may need acess to a nurse at any time. Her condition is stable and predictable and likely to remain so IF treatment and care regimes continue.
I reiterated this point that therefore her primary need is health care
I pointed out discrepancies between RNCC determinations and Continuing Health Care Screening Tools whereby the answer is NO to unpredictable health state which requires regular supervision from an NHS professional and NO to rapidly deteriorating mental health condition requiring regular supervision from an NHS professional!

Also pointed that that HCC have never recognised Nursing requirement ***. The Panel are to write letter to HCC clearly stating that Mum positively does require Nursing and is not Residential.

I gave evidence of dates of physically aggressive behaviour towards staff, at hospital, Residential Home and current Nursing Home.

22 May 2006 – SCPCT Panel Review
Criteria met for period 3 December 2004 – 7 August 2005
SCPCT incorrectly state Section lapsed after 6 hours
Point out attempt to reduce and discontinue antipsychotic medication led to agitation, more confused, tearful and aggressive at time. .
Needs not complex requiring regular supervision of NHS member etc – CONTRADICTING RNCC DETERMINATIONS.

WHAT CHANGED ON 8th August – she moved into secure Nursing Home – at my cost, that’s all!

July-September 2006 – Nursing home notes indicating numerous times of agitation being contained by staff, also noting times when I had to be called in to calm Mum, also noting very aggressive incident involving kicking staff etc.

Forthcoming Strategic Health Authority Independent Review Panel to consider whether proper procedures have been followed in reaching the decisions about the need for continuing NHS health care and whether it is felt the eligibility criteria for continuing NHS health care has been properly and consistently applied – period: August 2005 – May 2006
Period Criteria already met for period 3 December 2004 – 7 August 2005
B&NES Continuing Health Care Review Meeting Review period 30 May 2006 – to date

I’ve not yet returned form CC1, giving details of my concerns and reasons for appealing against the decision made by the PCT and not returned Consent Form to enable Mum’s records to be shared with the Independent Review Panel members.

Sorry for such long winded content: but due to the fact that I owe the Nursing Home for about 3 months outstanding invoices and that I have been digging into my own savings for the last 9-12 months to pay for Mum’s care, because I do not want to unsettle her and because it just does not make any sense that she no longer meets criteria for continuing care. I can’t go on like this. I think I’m going to respond to the HCC request for signature along the lines of:
‘I will not sign this form which is incorrect – Mum’s needs ARE Nursing not residential. Mum’s primary need is Health and as such I maintain that she is entitled to receive NHS Continuing Health Care funding – as indicated by criteria already having been met 3/12/04-08/05. Mum’s health needs have not and cannot improve, she has Alzheimers and in the words of the judge in the Grogan case, “it’s difficult to imagine a situation in which a dementia patient would NOT have primarily a health care need and that as such a care package is way beyond the remit of Social Services.”

As you are aware, I have tried to find a suitable local alternative placement for Mum that would accept local authority rates but am no longer prepared to consider this option due to the affect any such move would have on Mum’s mental health.

I therefore leave HCC, and by copy of this letter, SPCT and B&NES I request that you take responsibility for advising me of the best possible option for my Mother, bearing in mind that :
the Local Authority is not allowed to care for people whose needs are more than incidental or ancillary to the provision of accommodation, I dispute the fact that my mother’s needs are not more than social services could reasonably be expected to provide and I respectfully request that you submit to me in writing that you personally guarantee that the standard and quality of care that can be provided to my mother by the Social Services to a level of a Reasonably Competent Registered Nurse can be provided without the risk of clinical negligence.

In particular I request that you respond to the following questions:

Can the level of care be provided by social services so as to reduce the risk to a minimum, in compliance with the definitions of clinical negligence and the Provisions of the Health & Safety at Work Act 1974, the Workplace and Safety at Work Regulations 1992 and the Management of Health and Safety at work Regulations 1999, for the following:-

Nursing care for Health Needs detailed by RNCC determinations

Falls incurring injury resulting in surgery

Injury or death to herself or others as a result of her wandering and history of agitation and aggressive behaviour.

Her health and well being which can consistently be provided by a registered Mental Health Nurse.

Regular intervention of a registered nurse as detailed in RNCC Determinations.



Registered User
Mar 7, 2004
Dear Ellie, I am sorry I have no answers, but did not want you to think we do not care.

Support, funding, indeed help of any sort is such a minefield.

I can only suggest that you get mum's doctor, SW, CPN anyone that you have dealings with and ask for help.

Agree that when you look at test cases it seems simple :rolleyes:, but know how hard it is to get funding/help/support.

Maybe another member will be along with some better ideas soon.
Sending you love n'hugs,


Registered User
Dec 1, 2006
Ellie, I'm sorry I can't get involved with this as I don't feel competent to advise, but I would strongly urge you to contact either the AS Helpline on Monday, or Counsel and Care whose advice line is also excellent. In my case they (C&C) went to considerable trouble and sent me a printed copy of their advice afterwards: a very long and detailed document. http://www.counselandcare.org.uk/
Good luck, Deborah


Registered User
Aug 29, 2006
SW Scotland
Dear Ellie

I've read through your post too, and honestly have no idea what you should do.

I have huge sympathy for you, and admire your strength in continuing to fight. I wish you good luck.

Please tell us how you get on, it will help others in their struggles for funding.



Registered User
Aug 23, 2005
Counsel & Care

Thank you for your kind words all!

How does Counsel & Care work - just looked at web site and couldn't find mind way round very well!



Registered User
Jun 5, 2007
Surrey UK
Only to add my concern for you to that of others. I wish I knew more in order to help.
Would it be an idea to also write to your local MP with copies of everything. As A Constituent you have a right to expect help.


Registered User
Aug 23, 2005
Thank you Amble

I will do that!

I will get there but sometimes just wish there was someone there to fully support me!




Registered User
Oct 15, 2005
Read your post through Ellie. Sorry I have no personal experience of this but like Connie did not want you to think we didn't care. I admire you for fighting for CC for your Mum, such a difficult thing to get it always appears, I'm also saddened to hear of it's effect on your visits to your Mum, it's not how things should be is it.:( Take care.

Margaret W

Registered User
Apr 28, 2007
North Derbyshire

Your case appears complex and probably too much for most members to absorb. It certainly was for me. But it is just the sort of case that I hope to be able to help with when I have "retired" (in two months) and get some training in this area. If there is any - does anyone know of it? I feel that lack of knowledge of entitlement to money, treatment etc. is so dire that I want to get involved with sorting it out.

Ellie, if you are able to PM me your info in an orderly manner I will try to assimilate it, but I probably have no answers at the moment.

Much love


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