Your browser isn't supported
It looks like you're using an old web browser. To get the most out of the site and to ensure guides display correctly, we suggest upgrading your browser now. Download the latest:

Welcome to the MSE Forums

We're home to a fantastic community of MoneySavers but anyone can post. Please exercise caution & report spam, illegal, offensive or libellous posts/messages: click "report" or email forumteam@.

Search
  • FIRST POST
    • monkeyspanner
    • By monkeyspanner 15th Mar 08, 1:13 PM
    • 2,119Posts
    • 1,933Thanks
    monkeyspanner
    Continuing Health Care - Preparing to fight PCT's decision
    • #1
    • 15th Mar 08, 1:13 PM
    Continuing Health Care - Preparing to fight PCT's decision 15th Mar 08 at 1:13 PM
    Long Story so I'll try to keep it short.

    My MIL (age 84) was hospitalised for 7 weeks after a fall in July 2007. The family were advised to look for a care home as in their medical opinion my MIL could not return to her sheltered accommodation due to a high risk of falls and the council's care team being unable to provide the frequency and timing of visits required to meet my MIL's revised medication regime.

    The family were not made aware that a continuing health care checklist had been performed on my MIL prior to discharge in September and in fact all of us were completely unaware of the CHC system. The checklist concluded that a full CHC assessment was not necessary in my MIL's case. Had we been made aware of this decision as we should have been we would have challenged the decision at the time.

    My MIL had at the time of discharge:
    Diabetes (type 2)
    Parkinsons Disease (meds beginning to 'wear off' requiring supplementary meds)
    Acid reflux (previous hospitalisation due to near fatal gastric bleeds in 2005)
    Cognition problems (dislocated in time and location)
    Severe short term memory loss
    Paranoia (the medical staff were trying to poison her)
    Severe Mobility problems
    Circulatory problems due to beginnings of heart failure
    Vascular Dementia

    This combination of problems requires 9 different meds to be given at 7 different times in 14 doses, timing is critical. She has been unable for some years to manage her meds and would not be able to list her medical conditions if asked.

    Shortly after discharge in September we 'caught up' with the possibility of CHC and after some weeks persuaded the CHC team to assess my MIL in December. At this time we were assured that the assessment would be carried out as though it was done at the time of her discharge and we subitted a letter in support of our application. Predictably the CHC application was declined.
    We have since discovered.
    -The assessment team and lead nurse who prepared the case for consideration by CHC panel did not take our supporting letter into account.
    -The assessment was prepared in relation to MIL's condition at the time of the assessment and no regard to her condition at the time of discharge was made.
    -There was no social services input into the assessment even though the new assessment framework says there should be.
    -The contemporanous notes of the assessment teams are routinely destroyed when the assessment is 'typed-up' by the lead nurse (who did not take part in the assessment) so there is no way of seeing what the assessors actually wrote during the assessment.
    -The assessment prepared by the lead nurse was 'altered' by the CHC panel.

    Since this application was declined we have been asking for the official appeals procedure but this either does not exist in my MIL's area or the CHC team is unwilling to provide it. We have persuaded them to do a retrospective assessment for the period from discharge to the date of the declined assessment and to submit the declined assessment for 'peer review'. This may take some time as we have been told only retrospective reviews that relate to deceased claimants are being dealt with at the moment and that some of these date back up to 8 years!

    It seems that anyone who is in a care home is automatically assumed not to have a significant medical need and that anyone who is self-funding (my MIL has modest savings from the sale of her property) goes to the bottom of the priority list.

    We have also approached the PCT and SHA to inform them we wish to appeal but cannot find out how to, and we have also tried Age Concern and Altzeimers Society.

    Thanks for reading this far.

    We would be very grateful if anyone can give us some pointers on:
    -How to progress from here.
    -Specialist legal practises who can help.
    -Where we can obtain an independant medical assessment in support of any appeal we mount.
    Last edited by monkeyspanner; 15-03-2008 at 1:30 PM. Reason: Spelling
Page 2
    • weanie
    • By weanie 20th Sep 08, 1:39 PM
    • 249 Posts
    • 180 Thanks
    weanie
    Achieving PCT payment for elderly relative
    Hi
    I am just getting to grips with the site - which is fantastic. I am also just getting to grips with how to move forward an acceptable resolution to my mother's care problems/needs. This is why I am going to have to really study past posts and look with interests at new ones.
    My mother is realtively young to have dementia - 77 but the onset has been dramatic and bewildering for us all. There was a very traumatic event which caused a lot of upset and this may have been a catalyst. She was also my father's care before he died two years ago and he had Parkinsons which was very severe in his case. My mother has her own health problems which require variety of specialist doctors appointments and drugs - Oncology, Chest clinic are only two. She requires almost constant attention at this time and most of this attention and care is provided by the family - at great stress cost to us all. We are approachinghte time when we will be unable to cope and will have to call in a review of her needs and consider care.
    After a long wait, we now hav ethe enduring power of attorney but the responsibility of this is a little overwhelming. We are also concerned about the finality of a home placement but realise that constant visiting in to her home coupled with the very demanding regular stop overs at my home are no longer going to manageable.
    In short, I will be internet searching any advice and tips aout PCT funding and any practical advice or encouragement.
    I am grateful to all the people whose messages I have read and will soon be more comfortable with using the site and will be able to contribute whaqtever I learn.
    • monkeyspanner
    • By monkeyspanner 20th Sep 08, 8:08 PM
    • 2,119 Posts
    • 1,933 Thanks
    monkeyspanner
    Malid - As you say the 'lack of application of duty' is astonishing. One of the most interesting areas is that Social Services care managers fail to follow up on CHc funding to the detriment of their own departments funding and against their own rules. Not to mention forcing many to sell their homes to fund health care. Many would say that the distinction is irrelevant as it is all government funds. However, the PCTs in England are provided funds by central government to provide CHc funding. This funding is often not used as applications are blocked, hospital discharge proceedures are not followed and patients are not kept informed. As the funds are not ring fenced they are used by the PCTs for other purposes thus depriving the elderly and chronically sick of the healthcare funding which central government have allocated for this purpose.

    Weanie - Good Luck - It is a difficult time for you. You should be able to get a list of care home from your social services department but they are very unlikely to provide any selection assistance. We were very lucky to find a small owner managed care home for my MIL which actually feels like a home. No institutional smells, kind staff, good food. My MIL is so much happier there than in the sheltered accommodation she was in previously. Many of her paranoid thoughts abated soon after taking up residence simply because she felt safer. So my advice would be make appointments to look around several homes, you will probably know within minutes whether you like the home or not. Unfortunately the best homes will have waiting lists and it is sadly dead man's shoes to get a place. You will also need to try to match your Mum's current and potential future needs to the care homes facilities and care abilities to avoid a future move of homes.
    In a way because you and the family are shouldering the care burden it will be difficult to make an application for CHc funding. You should bear in mind that CHc funding is applicable to any care setting but you will need to demonstrate that your Mum's primary care need is medical rather than domestic. Initially you will need to involve social services and your mother's medical practitioners to decide together with the family what needs your Mum has and how these are best provided. From that point you can then open the financing issue. Social services will do their best to get your Mum to be self financing or at least contributing to her care financing. You will probably be told your Mum is not eligable for CHc funding without any formal assessment having been carried out by people who have no detailed knowledge, relevant training or authority. It is not uncommon for relatives to be told the patient needs to be at death's door to qualify. This is not the case. As soon as you mention CHc funding you will be viewed as 'difficult' simply because asssessment involves a lot of work for all parties. CHc assessment and funding is administered as you know by the PCT but you may have difficulty getting them to accept the need for an assessment. At least you are aware of the possibility of CHc funding, good luck in your quest.
    Last edited by monkeyspanner; 20-09-2008 at 9:02 PM.
    • weanie
    • By weanie 20th Sep 08, 10:14 PM
    • 249 Posts
    • 180 Thanks
    weanie
    Thank you so much - it is so encouraging to receive a direct response.
    As I say, we are very early in the process and sheer panic makes usconsideri various options as we go. It was a vaque possibility for Mum to come to my home full time and for us to sell/rent out/leave empty/buy out Mum's 50% of her own home.
    All this is to be further pondered but we feel at the moment that she requires more attention than such an arrangement could provide. For this to get off the ground even for a trial period, we have to feel confident that this would be what would suit Mum best and also that my own family could accept the disruption and the limitations of having someone with such pressing needs in our busy family home - I would also have to cut down working hours even more and I suppose we would have to apply for respite arrangements in order to have the occasional holiday.
    I have written to the PCT to ask for general advice and for a list of criteria and we are going to speak to the doctor again next week. We will aslo be speaking to a social worker and trying to judge the level of support or otherwise from various consltants as we go.
    One irony that occurs to me is that we have declined certain medical interventions which would have further supported our application on the basis that Mum's mental state suggests to us that the questionable benefits are outweighed by the worry and further confusion these procedures would cause.
    As has been said before, I have tried to absorb information froma variety of sources, but this site has provided a much more understandable format and the messages from yourself in particular have been real gems.
    Thank you so much
    • monkeyspanner
    • By monkeyspanner 20th Sep 08, 11:42 PM
    • 2,119 Posts
    • 1,933 Thanks
    monkeyspanner
    You might find this site useful for background and different experiences of the various systems.
    http://www.gpss.tripoduk.com/nhscare/
    • malid
    • By malid 21st Sep 08, 8:33 AM
    • 355 Posts
    • 167 Thanks
    malid
    Hi Monkeyspanner

    Your advice and site referrals are invaluable and I cannot thank you enough. My aunt has just received a 'contract' from the Nursing home which she is required to sign. I have stopped her signing to date but will now ensure that if she does she includes the statement - without prejudice; all rights reserved; see www.nhs infocare

    We did feel that my uncle was rushed out of the community hospital at the end; even though he was under strict barrier nursing. It was a case of chose where you'd like him to go (we were given 24 hours). There were no places in our first choice but more importantly it wasn't considered to have a suitable nursing provision. If we hadn't chosen a second option quickly (in an appropriate category), he would have been sent to wherever there was a bed available. We were forced into acting quickly and he was moved out within the week. I now feel quite guilty that I hadn't looked into all this earlier but it is quite difficult and time consuming and my priority was supporting and looking after my aunt and helping her with daily visits to my uncle.

    I am trying not to be cross so that I can be measured and polite yet assertive when I pursue this; it is quite a challenge though I have to say because of the whole unfairness of the situation.


    Weanie, did you mean Lasting Power of Attorney LPA) as opposed to EPA? My understanding is that the EPA (unless previously in existence) no longer applies. I have just registered the LPA for my uncle but will have to wait 6 weeks for it to be processed. Good luck with your endeavors.
    Don't let them grind you down; fight for your rights
    • monkeyspanner
    • By monkeyspanner 21st Sep 08, 9:23 AM
    • 2,119 Posts
    • 1,933 Thanks
    monkeyspanner
    Malid - It seems we have spent the last 12 months looking for the positive angles.

    With regard to your uncle's hospital discharge if the rules are similar an initial CHc checklist should have been completed by a suitably qualified medical staff member and you should have been informed of the results and allowed to comment, and if not satisfied allowed to request a full assessment. On the positive side if these proceedures were not followed then you will have more grounds on which to complain about your uncle's discharge. It seems standard practice to push patients out of hospital asap, and if you recall there was a press annoucement recently that hospital were not meeting their discharge targets so they are going to be under pressure to 'improve' performance on discharge timings and reduce bed blocking.

    Also if the hospital discharge had an initial recouperation period followed by a further assessment of care needs your uncle should not be expected to pay for care during this period. I can't remember where I saw this but will try to remember and let you know.

    It seems likely that your uncle will end up paying for part of his care, at least until you hopefully obtain CHc funding. Payments are covered by CRAG regulations and here is a link to current CRAG regulations, once again, new draft regulations have been published and you can link through to this new draft.
    http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_073650
    on the positive side of this the fees arranged at the care home by the council will probably be significantly lower than if your uncle was arranging his own care home contract.

    This site also has some good factsheets on care home funding
    www.counselandcare.org.uk

    If you obtain a retrospective CHc award you should get interest on the money paid and reasonable expenses e.g. travelling to assessments and panels, telephone, postage etc. So it is worth keeping records. Some awards I have seen just include a % mark up to cover all this.

    Is your uncle in receipt on Attendance Allowance? This is a non-means tested allowance payable in one of two levels (higher level was £64.50 per week in 2007-8) and would still be payable if your uncle is not in receipt of CHc funding except during hospital admissions. AA is still payable for the first 28 days of CHc funding or hospital admission.

    I wish you luck with your efforts to stay calm!
    Last edited by monkeyspanner; 21-09-2008 at 9:32 AM. Reason: Correction to link
    • weanie
    • By weanie 21st Sep 08, 10:11 AM
    • 249 Posts
    • 180 Thanks
    weanie
    Monkeyspanner - thanks for the further references - I will also follow them up

    Malid - you are of course correct about the LPA. We have only just received this at great cost of time and funds. The Office of Public Guardianship is swamped by the weight of these new applications and solicitors are only just getting their heads around the applicaion itself. We were unlucky in that it was our solicitor's first and the form was not checked properly and some minor error [a box not being ticked] was not spotted and the appliction was sent off by the solicitor and a lot of time was wasted. Our second appliction was in April and the permissions granted mid August. I rang the office several times and was eventually told that my application would be looked at by the person in charge to see if it could be presssed forward and my details were taken but no-one phoned me back and no speeding up was evident. good luck with this one.
    • malid
    • By malid 23rd Sep 08, 7:35 AM
    • 355 Posts
    • 167 Thanks
    malid
    Monkeyspanner - thanks for the further references - I will also follow them up

    Malid - you are of course correct about the LPA. We have only just received this at great cost of time and funds. The Office of Public Guardianship is swamped by the weight of these new applications and solicitors are only just getting their heads around the applicaion itself. We were unlucky in that it was our solicitor's first and the form was not checked properly and some minor error [a box not being ticked] was not spotted and the appliction was sent off by the solicitor and a lot of time was wasted. Our second appliction was in April and the permissions granted mid August. I rang the office several times and was eventually told that my application would be looked at by the person in charge to see if it could be presssed forward and my details were taken but no-one phoned me back and no speeding up was evident. good luck with this one.
    Originally posted by weanie
    Hi Weanie, Just noted that you are working through a solicitor. You don't need to when dealing with isses such as LPA. I have done all this myself so at least the cost is limited to the £150. Crossed fingers that the form was correct - I'll keep you posted.

    Monkeyspanner - uncle was in receipt of higher amount of AA but this stopped after 4 weeks in hospital. Will post an update on events later today.
    Don't let them grind you down; fight for your rights
    • monkeyspanner
    • By monkeyspanner 23rd Sep 08, 9:01 AM
    • 2,119 Posts
    • 1,933 Thanks
    monkeyspanner
    Monkeyspanner - uncle was in receipt of higher amount of AA but this stopped after 4 weeks in hospital. Will post an update on events later today.
    Originally posted by malid
    As your uncle is now out of hospital you can ask to have the attendance allowance reinstated, from our experience this could take some weeks. If you are successful with CHc any AA payments whilst in the care home will be deducted from your retrospective CHc award. Your uncle is still entitled to the first 4 weeks of AA under CHc funding. (possibly not if awarded from discharge as they may view hospital-discharge-care home as one contiguous event)
    Last edited by monkeyspanner; 23-09-2008 at 12:08 PM.
  • pmrita
    Continuing Health Care
    I would be grateful if anyone can advise me on preparing for a review meeting for Mums CHC. My Mum is 81 and lives alone and was diagnosed with Lung Cancer, COPD, first stages of Dementia and Paraphrenia in December she was discharged from hospital in February as she did not want any further treatment. We were able to secure an excellent care package as it was felt Mum did not have long to live. She has amazed everyone as she is still here, I was informed yesterday that they want to review Mums care package, I have a feeling that they may want to reduce it considerably, she also has leg ulcers and some continence problems. How can I prepare for this meeting to ensure that I have all the facts as I may have to fight for care for Mum

    Many thanks
    • monkeyspanner
    • By monkeyspanner 24th Sep 08, 4:58 PM
    • 2,119 Posts
    • 1,933 Thanks
    monkeyspanner
    Hi pmrita
    -Was your Mum discharged to a care home or to her own home?
    -Is this a CHc funding review with the PCT or a care package review?
    -Would I be right in assuming that your Mum was awarded CHc funding on the basis of end of life care?

    If it is a CHc funding review in England you can familiarise yourself with the decision support tool criteria this will help you look at the various assessment areas. Here is the DST link.
    http://www.dh.gov.uk/en/SocialCare/D...care/DH_073912

    The national framework for CHC this document gives the background on which the DST is based.
    http://www.dh.gov.uk/en/Publications...ance/DH_076288

    A commentary on the new CHC national framework from The Association of Directors of Adult Social Services on page 5 of this document it talks about the need for a consistent use of the DST and the number of highs mediums etc which should constitute a primary health need.
    http://www.adass.org.uk/publications...commentary.pdf


    If it is a care package review do you know what the medical prognosis is and is it different from when your mum was discharged from hospital? Who is conducting the review and are they appropriately trained?

    Hope this helps and good luck.
    Last edited by monkeyspanner; 24-09-2008 at 5:02 PM.
  • pmrita
    Continuing Health Care
    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
    • By monkeyspanner 24th Sep 08, 7:44 PM
    • 2,119 Posts
    • 1,933 Thanks
    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
    Continuing Health Care
    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
    • By monkeyspanner 24th Sep 08, 8:59 PM
    • 2,119 Posts
    • 1,933 Thanks
    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
    Continuing Health Care
    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
    • By malid 25th Sep 08, 7:16 AM
    • 355 Posts
    • 167 Thanks
    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 CountyCouncillor.

    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.
    Don't let them grind you down; fight for your rights
    • monkeyspanner
    • By monkeyspanner 25th Sep 08, 10:57 AM
    • 2,119 Posts
    • 1,933 Thanks
    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.
    Last edited by monkeyspanner; 25-09-2008 at 12:13 PM. Reason: corrections
    • monkeyspanner
    • By monkeyspanner 25th Sep 08, 11:28 AM
    • 2,119 Posts
    • 1,933 Thanks
    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.
    Last edited by monkeyspanner; 25-09-2008 at 11:33 AM.
Welcome to our new Forum!

Our aim is to save you money quickly and easily. We hope you like it!

Forum Team Contact us

Live Stats

1,298Posts Today

6,927Users online

Martin's Twitter