Continuing Health Care - Preparing to fight PCT's decision

pmrita

Hi Monkeyspanner

Many thanks for your quick response. Looks like I have alot of reading to do tonight. The care package was fast tracked through while she was in hospital, I had her local councillor involved and the Head of Social Services in the town where she lives and she was discharged to her own Council owned home. She had numerous procedures whilst in hospital including a Broncoscopy, they tried to do a biopsy, but unfortunately due to the location of the lesion in the lung they were in danger of collapsing Mums lung so they gave up after several attempts, so were unfable to confirm the type of lung cancer and whether it was a fast or slow growing tumour. Mum said she was too old for chemo or radiotherapy so she was discharged. She was admitted again 4 weeks later with an additional problem BP 70/40 and the Doctor when "pushed" stated she may only have a couple of weeks to live. She was admitted to a Hospice on Easter Sunday (March) for a couple of days for symptom control and the Doctors there stated Mum might have a couple of months to live. She did not leave her bedroom for three months and in that time hardly ate anything. She has lost nearly 4 stone in weight. During this time she has had daily visits from the District Nurse and wears a morphine patch.

Her mobility has improved and I recognise that she does not need the same nursing care that she received when she initially left hospital, as at that time she could only move out of the bed if she was aided by 2 people. So we are prepared for the care package to be reduced, but I am concerned that "they" may try and remove the care package and Mum end up with a Home Help for a few hours a day/week.

She still has lung cancer & COPD, that has not changed in fact Dementia & Paraphrenia is an additional medical condition

I was informed by Mums CPN that there was to be a review of Mums care package, and she mentioned the District Nurse & GP I do not know whether anyone else is involved and whether they are appropriately trained to do so.

Because of Mums mental condition every time a "medical person" asks how she is she automatically replies she is fine and can do everything for herself, which is not the case.

Any advice would be gratefully received

Kind regards

debbie546666

To Malid and Monkeyspanner, I just wanted to say that I am in awe of you. Have you ever considered working for any of these bodies, because they need you - and so do we!

I look forward to hearing of your success.

monkeyspanner

Hi pmrita
I have to admit I feel a little out of my depth here. The links I gave you were primarily to do with CHc funding and assessment. From what you have said it does not appear that they are looking at removing CHc funding but as you say changing the care package they are funding. So I wonder if the links I have provided will be of much help. From the severity of your mum's medical condition I am surprised they are successfully managing her needs with the care package they have in place at the moment.

IMHO a home help or council employed care worker would not be a viable option. From past experience they are not allowed to supervise the taking of or administration of medication. For health and safety reasons they are not supposed to lift a patient and can only assist in the most basic of tasks. Thus I think it unlikely they could successfully remove the daily district nurse provision.

I did find this strategy document which is fairly recent and may give you some guidance. At 174 pages (you can see where the NHS budget is going!) I haven't had time to read it but give it a go and see if I can pull some memorable quotes for you to use. It is likely to be 99% padding and 1% substantive. Here is the link:
http://www.endoflifecareforadults.nhs.uk/eolc/files/DH-EoLC_Strategy_promoting_high_quality_Jul2008.pdf

I will do some more digging for you.

pmrita

Hi Monkeyspanner

Thanks again for your prompt response.

Reading between the lines, "they" are trying to say that because my Mums needs have changed her primary needs are not nursing care, even though she has all the conditions I have previously mentioned including terminal lung cancer. Therefore I think ( although I don't know alot ) that they may be trying to stop the CHC funded by the NHS and replace it with a package funded by Social Services.

The care workers that Mum has of a morning and night prompt her to take her drugs, which are in a Blister pack dated with am pm and night. I have been informed that the DN cannot adminster drugs ! !

In fact the other week when the DN attended to replace Mums morphine patch, she was not a "qualified" dark blue uniform nurse, so could not replace the patch, she rang her office who told her she couldn't replace the patch, but told me I could ! !

Really appreciate your help, in our hour of need.

Regards

monkeyspanner

Hi pmrita
It doesn't sound like the NHS/Social Services have made much provision to date and to withdraw the little help you mum is getting would be unreasonable.

Underlying the CHc framework is the principle of a primary health care need which is complex and unpredictable. However, there it is also accepted that a well managed need is still a need. So for instance if your mum's pain is being managed by a patch that doesn't mean her need for pain control should not be assessed.

As I thought the policy document in my last post is unlikely to give you much help. I would concentrate on the CHc framework.
page 23 sections 75/76 cover care planning
page 25 section 82 on covers thereview process
page 25 section 87 is of particular interest.

87. Neither the NHS nor LAs should unilaterally withdraw from an existing funding
arrangement without a joint reassessment of the individual and without first consulting
one another and the individual about the proposed change of arrangement. Any
proposed change should be put in writing to the individual by the organisation that is
proposing to make such a change. If joint agreement cannot be reached upon the
proposed change, the local disputes procedures (see below) should be invoked and
current funding arrangements should remain in place until the dispute has been
resolved.

Essentially what this means is that you must be kept informed and if you don't agree with the decision you can refer it to dispute resolution, whilst the dispute is being resolved there must be no gap in service provision. Dispute resolution is initially a PCT review panel and then SHA independant review panel. As you can imagine convening these panels and gathering the relevant paperwork can take some time and in the meantime the existing care provision must continue.

Hope this helps.

I would also like to suggest that you cantact Macmillan nursing. They provided invaluable help in conjunction with the District nurses during my brother-in-laws recent final illness with bowel cancer, My sister-in-law cared for him at home with their help.

pmrita

Hi Monkeyspanner

What a God send you are !

I only usually use MSE for the usual holidays, Banks etc. I never thought I would find advice and answers to my Mums problems on here

Even though it is only the start of the battle, I feel a lot better with the information you have given me and not like I did this earlier today "a lamb to the slaughter"

One question if I may, at the review meeting, at the end of their "questioning" when they come to their decision about reducing the care package is it at that stage that I state that I disagree with their decision and do I ask for a dispute resolution and when do I ask for it to be put in writing

Once again thanks for your kind assistance

Regards

malid

This is an update of where I am for information:

On Monday, I eventually managed to speak to the CHC Co-ordinator – at the LHB (who I initially spoke with last week). She referred me to the Acting NHS Funded Healthcare Manager who promised to look at the case and contact me on Tuesday.

Tuesday afternoon, I decided to make contact and was told:

• My uncle had received a MDT assessment at the hospital (family not aware of any of this; my uncle would not understand therefore procedure/protocol not observed as far as I am concerned)
• We have not been informed of the assessment decision either verbally or in writing - procedure/protocol not observed
• The decision was that he was entitled to NHS care (not CHC) and Social Service Care (I have used the Decision Support Tool and Guidance and assess him as being eligible – over and above criteria required)
• We have not received anything in writing about his care/nursing needs – appears to be a discharge protocol - procedure/protocol not observed

The contact at the LHB appeared helpful (NB – IT PAYS TO BE PLEASANT AND NOT AGGRESSIVE ETC DESPITE YOUR ANGER/IMPATIENCE) and informed me that on discharge, responsibility for instigating NHS CHC lies with the hospital. Responsibility is transferred to the LHB post discharge if there is an element of NHS funding. Individual is re-assessed after approximately 3 months. I emphasised that my immediate concern was that all the protocols on deciding on CHC in the first place had not been met. She suggested the following options:

I contact

• The hospital concerned
• The Social Worked concerned
• The Director of Nursing

I decided in the first instance to contact the SW. I left a message (Tuesday) but my call has yet to be returned. I shall contact again this morning and armed with ‘my folder’ of information (thanks to Monkeyspanner) will push for a meeting. Depending on how this conversation goes, I may write to the Director of Nursing to complain about the lack of adherence to the protocol. I may consider involving his excellent GP and County Councillor.

I explained that I was informed by a senior nurse, about a week before his discharge, that my uncle would need to go in a particular category of nursing home (labelled ‘EMI’ – high level of specialised care with the M denoting ‘mental’). LHB staff was not aware of this and seemed quite interested given no CHC funding approved. She is now going to bring forward a review of his assessment ‘in the next few weeks’ and will contact me so that I can agree a date to attend. I have noted this in my diary and will follow up in two weeks if I don’t hear anything. I was told that if he is assessed as eligible for CHC, this could be backdated if considered relevant. I noted this but reaffirmed that my concern was the original process – or lack of – for the original decision.

In the meanwhile, my aunt has received a Service user Agreement from the Nursing Home for signature. Payment responsibilities are unclear and as there are missing documents (some referred to but not included), I will not allow her to sign. I am considering contacting the home manager to discuss further. If I/she does sign, I will use the ‘Without prejudice….NHS CHC statement. Interestingly, a covering letter does refer to being able to meet the ‘nursing needs of…….’

Sadly, whilst all this is going on, my uncle’s condition appears to be failing fast. It is quite heartbreaking and particularly distressing for my aunt who continues to visit daily.

Apologies for the length but I hope my explanation of what I’m doing helps others move forward with their disputes etc.

monkeyspanner

Hi pmrita
I think it would be useful if at the beginning of the review meeting you asked exactly what the purpose of the review was.

If it is to review the care plan then I would expect that to be slightly less formal and you may well be informed of the suggested changes at the meeting. If the suggestions do not meet with your approval you should state that you do not agree, give your reasons and ask for your comments to be recorded. You should also ask for their revised care plan to be sent to you in writing.

If it is a formal review of the CHc funding this should be carried out by somebody suitably trained in the use of the DST (decision support tool) and a multidicipline team is recommended. At our review meetings we went though the DST section by section and 'negotiated' the need assessment level. There is also a section in the DST for patient/patient representatives comments/representations. We were offered the chance to take this away with us to fill in, this is quite a good idea as you always think of something you should have said after the meeting has finished. I have to say that the assessors interpretation of the meaning of the language in the DST was contrary to my understanding of basic english. Also whilst they were quite happy to accept that a history of falls could be taken as a current need and assessed accordingly they were not happy to do the same with my MIL's non-compliance(due to lack of understanding) with her medication regime or her history of paranoia. These anomalies had to be reviewed as part of our appeal at the PCT review panel and were accepted at that time. You will find they are quite happy to put down low and medium risks but will resist entering high or severe. This is presumeably because if you need a certain number of high/severe assessments to be successful. It is worth noting here that the CHc framework is very clear that if an assessment is borderline the worst case assessment should be entered. We found that during the reviews the opposite was true and we were unable to shift the assessors, if this happens to you I would suggest you object at the time and ask for it to be recorded. Again the PCT review panel was more reasonable. I would not expect the assessors to give you an on the spot decision and in my MIL's area the actual assessors are not involved in the decision and it is made by a panel of people who have no personal contact with the patient. We found this extremely frustrating as they were basing their decisions on written assessments that had been reviewed and rewritten by 'lead nurses' thus were at best 3rd hand by the time they were put in front of the decision panel. We were also told that notes taken by the assessors were routinely destroyed(although we found out later this was not actually the case). You should be sent a copy of the DST together with the decision. This, however, does not always happen and in my MIL's case the PCT review panel did not have the latest DST provided and were therefore expected to make a review on incomplete evidence.

As belt and braces we got into the habit of also writing to whichever department we were dealing with outlining our understanding of any decisions made in any meeting and telephone calls so that at least there was a written record and we were creating our own 'evidence trail'. If the relevant department fails to refute your understanding of the events/discussions/decisions then you have something to fall back on if and when you need evidence later. It sounds paranoid, but you should not count on complete and accurate records being kept and records conveniently 'go missing' at times. For instance we paid for my MIL's hospital records and received about 300 pages. We could not find certain things and ask for a check to be made and another 300 pages arrived mostly additional to the initial batch.

monkeyspanner

Hi Malid
I am glad you are making some progress.

I am not surprised you have found that discharge proceedures were not followed, we found similar things in my MIL's case. It seems that whilst the PCT were training their CHc staff no training is given to the hospital discharge teams therefore their knowledge is poor at best, misinformed and inaccurate at worst. So the gatekeepers of the CHc system where most people will encounter it i.e. on hospital discharge after a significant medical event are not properly trained in their responsibilities. More importantly the Social Services Care managers are similarly badly trained and are not pushing for CHc assessments to be made.

By all means follow up with the SW, Director of nursing and hospital, but do not expect too much. We did all of that and made a formal complaint about CHc assessments and the discharge proceedures and got nowhere and neither did our MP. Although he was more concerned about replacing his party leader at the time!

Your best bet is to carry on with your PCT contact and I would recommend you put in writing a formal request for a retrospective CHc review.

We got into the habit of also writing to whichever department we were dealing with outlining our understanding of any decisions made in any meeting and telephone calls so that at least there was a written record and we were creating our own 'evidence trail'. If the relevant department failed to refute our understanding of the events/discussions/decisions then we had something to fall back on if and when we needed evidence later. It sounds paranoid, but you should not count on complete and accurate records being kept and records conveniently 'go missing' at times. We also had a problem at our first PCT review panel because they could find no real evidence of my MIL's medical problems between discharge and her first CHc assessment. I would recommend you ask the care home to keep a record of any non-compliance, behavioural problems, paranoia and other medical events however 'normal' these may seem to the care home.

If the PCT drag their feet you can apply pressure by contacting the SHA (Strategic Health Authority) outline your problem and ask them if it is possible to review the process to date.

One of the worst aspects of this process is you can lose sight of your relative and their need for support. The system reduces them to a series of problems you feel have to be resolved.

pmrita

Monkeyspanner

Once again many thanks for your kind assistance.

Another question if I may, because Mum is suffering from early Dementia and Paraphrenia, at the review meeting, if it is Mums wish can I speak on her behalf or do I need something from Mum in writing to state that she wants me to speak on her behalf ? I have visions of sitting in a room and "they" ask Mums lots of questions to which she replies the answers that she thinks they want to hear and that she may please "them" eg I don't need any help, I can manage and I am fine !

Because of her condition, Mum thinks that being "good" will ensure "they" give her a "good report"

Kind regards