Continuing Health Care

A question about : Continuing Health Care

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.

Best answers:

• 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.
  Have you got your/your mum's MP in on the action? I'm sure there must be an appeals procedure. CSCIE will be able to tell you, their number for your area should be on their website. HTH
• Yes we have involved MIL's MP. His response was 'I hear this all the time, it's the usual tale of woe' he did write a few letters got several obstructive replies and then got diverted onto the process of choosing a new leader.
  Is CSCIE the Commission for Social Care Inspection? If it is thanks for the suggestion I will have a look at their web site.
• Sorry, yes - CSCI. They may not be able to help but they may be able to point you in a useful direction.
• We have been informed that my MIL has been awarded Nation Health CHc funding from 7 months after being discharged from hospital.
  The CHc Panel decided there was insufficient evidence to award for the first seven months of MIL's residence in a care home. The primary reasons for the lack of evidence was.
  -3 months delay to an initial assessment due to being passed around the system and discharge priceedures not being followed.
  -We appealled the first assessment as it was inaccurate and did not reflect MIL's medical condition, and a reassessment did not take place for a further 3 months.
  -A retrospective review of MIL's medical status for the first 3 months after discharge was carried out but not submitted to the CHc panel.
  -Our submissions to the assessment process were either ignored or not taken into account.
  We will now have to appeal the decision re the first 7 months based on the fact that proceedure has not been followed in a timely and open manner. But at least we have an award ongoing until the next CHc reassessment.
• Well done monkeyspanner and good luck for future progress.The system will never change unless people like you are willing to challenge it.
  Good to see that persistence pays off.
• Just a quick update. The PCT have capitulated and have agreed to pick up funding from my MIL's discharge from hospital which is great news. If anyone has queries regarding Continuing healthcare funding for a relative or friend we would be happy to try to help. Thanks for all the past support.
• I'm glad you have got some resolve. Think of those poor people who have nobody to advocate for them, as your MIL has. I'm afraid those who shout loudest, get.....it's the only way. I know it shouldn't have to be but you have to fight for everything these days in terms of recievibg a service, be that social or healthcare. Hope MIL is getting on well and you can breath a temporary sigh of relief!
  by the way what a cool word capitulated is !
• That's terrific news, well done. So the message is, be persistent, don't give up.
• Malid, is your uncle in Wales too?, as the rules are different there. Are you paying for his care at present?
• Yes he is in Wales. I think that currently the payment will be made up of a contribution from social services and the nhs. We're waiting to find out. I am assuming that my uncle's payment would be any income he has (allowing him to keep the Ј25? a week pocket money) as his savings fall significantly below teh Ј19,000 minimum payment threshold.
• If he is fully funded by CHC he will keep all his pension. Re-reading your post it sounds as though you have a good case for CHC, mainly on complex and unpredicablity criteria. I would imagine that NHS are funding his nursing element and SS are covering 'bed and board' element at present. SS will be as keen as you for him to be fully funded by CHC so do get his Care manager/social worker to chase it up. CHC will turn down due to any small point they can find, so make sure you are present at the CHC assessment as you know about his behaviours.
• It looks very much as if your uncle is in need of 'nursing' and not simply 'care'. Someone else on another thread put it very well - if a person goes into a residential care home it's assumed that the 'care' they need is such that an unskilled but well-meaning although non-medically qualified person would provide, a family member (although not one who is 84 and frail herself, perish the thought!!)
  Where skilled nursing is needed then that should be paid for by the NHS, because that's what you get when you go into an NHS hospital. For example, my DH is an insulin-using Type 2 diabetic, has been since 1981, and he manages his condition himself with insulin injections and blood-glucose tests. However, when he's been in hospital for knee surgery they insist on coming along and doing the blood tests for him 'because it's nursing'.
  Your uncle seems to be in a similar (although far worse) situation. He needs nursing, and that comes out of the NHS budget. A person in an NHS hospital gets to keep all his state pension, although he may lose his Attendance Allowance if that is being paid (reason: he no longer needs to pay someone for his care, in hospital he's getting it free).
  I know what you mean about the skin on the legs. DH's breaks down for no apparent reason and he has to be careful e.g. doing things in the garden. We've just come back from holiday and we ended up buying Mepore dressings in an 'Apotheke' (pharmacy) in southern Germany.
• Hi Malid
  First of all your experience is not unusual, and you are on the right track. Social workers are not trained in CHC assessments and are not usually aware of the assessment criteria. There is a general assumption both in social services and medical circles that CHC funding is virtually impossible to obtain and people are either not informed of the posibility or detered from applying.
  An initial checklist should have been done on your uncle prior to hospital discharge and it is considered good practice for close relatives to be kept informed and invovled in the assessment process. The patient or their representative have the right to challenge the decision making process and in the circumstance you outline a retrospective review and full assessment for CHC should be requested. You appear to have started this process but you will probably need to be assertive to get the process moving. I do not see how a 'nurse for the elderly' could think that a full assessment should not be done in this case.
  Because of the extreme variance from area to area in the awarding of CHC funding a new uniform system was introduced in October 2007 for England. I am not sure if the same system was introduced in Wales at the same time.
  The medical conditions you outline would certainly seem to indicate that your uncle's primary need is medical rather than domestic.
  CHC funding assessments look at a number of areas of need and I believe your uncle should be assessed in the high or severe categories for a number of these. Namely:
  Continence
  Cognition particularly if dislocation and inappropriate behaviour is present.
  History of falls
  Complex medical needs diabetes, parkinsons, dementia.
  Nutrition if supervision of meals is needed.
  Tissue viability.
  I am sure I haven't covered the full list. Obviously categorising the patient's need is to some degree a matter of opinion but if you don't agree with the assessment it is possible to challenge it at appeal panel.
  It is also worth remembering that a well managed need should still be assessed as a need. e.g. if your uncles parkinsonian symptoms are well managed by medication this does not mean he does not have a care need in that area and it must be assessed.
  You should ask to be present at any assessment and it is as well to inform yourself of the assessment criteria so you can argue your points with the assessors.
  Don't be put off you may have to fight long and hard to get this funding. It took us 12 months, 3 assessments, a review of hospital and medical records, 2 appeal panels, and involving the Strategic health authority to review the PCT's decisions to get a retrospective decision in my MIL's favour.
  You mention that your uncle is below the funding threshold, I assume therefore he would, if CHC is not awarded, be contributing the bulk of his income (pension) apart from the weekly allowance of about Ј20 towards his care fees. If CHC funding is awarded it is not means tested so he should keep his pensions. Attendance allowance, however, would cease if CHC is awarded.
  It is also worth mentioning that CHC funding can be awarded in any setting, care home, care home with nursing, or at home. Although it does not sound as though your Aunt could manage at home it might be possible to fund private nursing out of CHC funding.
  Hope this helps and Good Luck.
• Many thanks to all who have responded for your welcomed information.
  My uncle has a long list of nursing needs which are complicated by severe progression of his Parkinsons and fluctuating blood sugar levels due to his diabetes. He takes a cocktail of medication four times of day; none of which he would be able to remember let alone take on his own.
  I have read trawled so many websites for information and it is difficult. This forum is the best I have read! However, it just shows how people are missing out on various benefits because nobody informs them of their rights etc. This is a case in point. I'm not exactly stupid but I have had to take the initaitive to find things out. My 84 year old aunt doesn't stand a chance!
  I have not had the expected return phone call so I shall contact the CHC coordinator again today. Monkeyspanner, the rules for England applied for Wales as well from Oct 2007 (as far as I can see).
  As far as assessment criteria:
  Continence - no control, has a catheter and has to wear incontinence protection.
  Cognition particularly if dislocation and inappropriate behaviour is present - doesn't know where he is or what he did 2 minutes ago; at times is convinced that someone is 'after him'. Has pulled his catheter out several times -causing actual trauma on occasion - and blames another patient
  History of falls - has fallen umpteen times at the hospital (and before admission)
  Complex medical needs diabetes, parkinsons, dementia - meets this criteria without question
  Nutrition if supervision of meals is needed - diet has to be managed. Extreme weight and muscle loss over the last few months.
  Tissue viability- very poor; skin breaks down with slightest knock. This is a concern due to healing problems because of diabetes.
  Again, many thanks. I will let you know how I get on.
• Hi Malid
  Here are a couple of links you may find helpful:
  Decision support tool-this is the document that CHC assessors will fill out when an assessment is done. Although it is called a DST it is actually just a standard assessment form. There is no attached guidance as to how many highs or severes are needed for a successful application. We have been unable to get a clear answer as to how a decision is made and thus how this helps to avoid variances from one health authority to another is beyond me. Another weakness of the assessment process is that normally no consideration of medical/hospital records is made so the assessment is merely a snapshot of the patients condition on the day of assessment. My MIL's care home manager was very helpful on the last assessment as she attended the assessment with all MIL's care home records and we had obtained full hospital records (at a cost).
  https://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.
  https://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.
  https://www.adass.org.uk/publications...commentary.pdf
  The guidance in this document is spot on but is so far from the attitude that we have experienced from Social Services and their care managers as to be rediculously out of touch with the reality of service delivery in this area of local authority care provision.
  I hope this helps. There are many other documents I could point you towards but these are the main ones to consider prior to an assessment. You can also have a go at filling the DST out prior to the assessment. Please feel free to PM me for my e-mail address if you would like a contact to run developments. past.
• Thanks again Monkeyspanner.
  Unable to contact CHC Coordinator today; she didn't phone back as promised this morning and when I rang again this afternoon she wasn't in work. I will be phoning again on Monday; I don't give up.
  I will have a look at all the links you hae provided and will certainly contact you if I need further support and guidance on this. At the moment, I'm trying to be optimistic as I cannot see how he could be refused. However, ever the realist, I am prepared for a battle and have no intention of letting this one go.
  Cheers
• Hi Malid
  It appears the Welsh Assembly did not adopt the new national framework at the same time as England.
  https://www.counselandcare.org.uk/!!!..._your_Care.pdf
  see page 9
  https://www.counselandcare.org.uk/!!!...April_2008.pdf
  https://www.wales.nhs.uk/newsitem.cfm?contentid=9296
  There seems to be the intention to use the english DST but I am unclear as to what the current situation is in Wales
  You are not alone in having been kept in the dark see this newspaper piece.
  https://www.southwalesargus.co.uk/new...or_dad_s_care/
  or this one
  https://www.guardian.co.uk/money/2008/aug/03/health
• Hi Monkeyspanner
  Excellent links as usual. You are right about Wales and I cannot establish what happened after consultation. From the consultation documents, it appears that the intention is to go forward with the Framework and I believe that Wales is working within the definition now. I guess the catch here may be that there is no legislation as yet. We shall see as I will be following this up with the Welsh Assembly on Monday.
  The case studies are heartbreaking. It's the unfairness that gets me and the inconsistent application of rules and criteria. However, the most appalling tragedy is the lack of information about this or the lack of application of duty to inform people of their rights. Clearly neither my uncle nor my aunt can follow this through but it is disgusting that she hasn't even been told about it. The consultation document notes the need for the individual and the family should be informed and understand the assessment process; nobody told us anything.
  Thanks again and I hope that this is useful to others in the same situation. I shall keep updating in the hope that it is of benefit.