You may have hit a brick wall at a local appeal for NHS Continuing Healthcare, and you want to take things further. Your next step is a Continuing Healthcare Independent Review Panel (IRP) hearing.
This is a regional level appeal and involves a panel with an independent Chair plus members of health and social care from outside your area. It’s supposed to give you the opportunity to have your Continuing Healthcare appeal reviewed by people who weren’t involved before.
However, we’re hearing increasing accounts of Continuing Healthcare Independent Review Panel meetings being less than independent. Families are coming up against the same flawed arguments, incompetence and obstruction as in the local appeal process.
As well as involving people from outside the area, many IRPs now also seem to invite the same local assessors whose maladministration led to the appeal being needed in the first place. The IRP can turn into a battle of ‘their word against yours’, which is hardly the independent review it should be.
This article is not to discourage you from pursuing an IRP. People do win. Our aim is to highlight what you may come up against – so you can prepare for it and keep labouring every point the Panel may want to simply dismiss.
David contacted us about his mother’s recent IRP. He recounted what happened in the meeting – and afterwards. He shares his story here:
“My sister and I attended the IRP meeting and were very optimistic at the end of it. The Chair of the meeting had said that he was impressed that we had prepared such a good case. Additionally, the representative of the local NHS Trust Continuing Healthcare Department (who said she had nothing to add when asked to comment on our case by the Chair) remarked after the discussion was over that, with cases like ours, it’s pretty obvious what the outcome would be.
We took this to mean that the Trust had decided not to oppose us, and that they thought the IRP would overturn the recent decision to refuse funding.
We had taken with us a 10-minute video of our mother, which seemed to have a profound impact on the three Panel members and Clinical Advisor. It showed our mother to be unable to communicate and to be completely reliant on others for all her needs.
But our optimism was dashed when, eight weeks later, we received the notification saying our mother did not qualify for Continuing Healthcare funding! The same language used in previous rejections was used to justify the decision: “Her needs are merely incidental or ancillary to the provision of accommodation and of a nature which an Authority, whose primary responsibility is to provide social services, could be expected to provide. Consequently she does not have a primary health need.”
Our challenges in respect of how, according to NHS definitions of social need versus health need, our mother had a health need, were ignored. And our challenges around the Behaviour domain where previously it was interpreted as aggressive behaviour (contrary to NHS definitions which specifically mention the passive self-neglect behaviour of dementia suffers) were also ignored.
Behaviour was again defined as “verbal or physical aggressive behaviour such as biting, scratching or hitting out”. The IRP went on to say, “The Panel noted that the dictionary definition of behaviour was the way in which a person behaves in response to a particular situation or stimulus. This suggested that some type of response or reaction was needed in order for this to be considered as behaviour.” On this words fail me!!
They are making up domain definitions however they wish – from the dictionary!! What they should be doing is using the very precise definition in the NHS Continuing Healthcare documents. I did refer them to this in writing and verbally at the meeting.
We don’t know who had the biggest input to the IRP decision but we are sure that the member of the Panel who acted as Clinical Advisor took offence at us referring him to the definitions in Continuing Healthcare documents during the discussion, when he was constantly getting his definitions (particularly around behaviour) wrong.
They did move the Behaviour domain up from No Needs to Low, and the Nutrition domain from Moderate to High, but that was all. However, our main argument was not what domain scores she gets but the fact that the very descriptions of her condition in NHS documents show that (by the NHS’s own definitions), she has a health need not a social need. But those arguments were not addressed.
We are now convinced that the IRP is not ‘independent’ at all. The arguments used and the errors in assessment made were identical to the two previous local Panels – right down to the wording used to reject her case. And, as before, nobody on the IRP seemed to show the slightest interest in using the NHS’s own published definitions, but would rather use their own arbitrary ones.
We are obviously now going to the Ombudsman, however we wonder if they too will be part of this same conspiracy to stop any dementia patients getting Continuing Healthcare funding.”
Have you taken your case to an NHS Continuing Healthcare Independent Review Panel?
If so, what was the outcome for you?
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I can relate to this also. I realise it’s an old article but where it says “that the member of the Panel who acted as Clinical Advisor” – is this actually allowed? I had the same experience recently at IRP, where a member of the panel making the decision was also acting at the Clinical Advisor. But is this not a conflict of interest? Does anyone have any knowledge or advice? Thanks
Nothings changed we recently had an IRP MEETING AND ALL THE POINTS MENTIONED WOULD STILL APPLY
😩
Hi Marie,
I’m really sorry to hear that, Trying to get an unbiased IRP is a miracle in itself considering the Chairs wages are paid by the NHS.
I hope that you’ve had outside help of some sort, as it absolutely does make a difference.press on with the Ombudsman and even after that a private legal case against them can be brought forward.
They all hope that you give up, it’s a national disgrace the whole of CHC funding.
I had an Independent Review Panel last year, that was done via Video link, with my solicitor and my wife.I told them how the domain scores had been changed.That when I told the complex nurse on a negotiation meeting , that she declared was a Stage 2 meeting , 3 years after a Stage 2 assessment that stated. CHC from 1 December 2011, until 4/9/2012.That my mother was not eligible for CHC as she could swallow .After all this was asked by the Independent Chair , how many illness’ s did your mother have.I said 40.Can you name them , which I did.This included Sepsis, Severe Sepsis and Septic shock.Asked about Debridement for treatment of bed sores, which healed in months.My mother was debetic with no diet plan at all This would delay the healing process.Found to have one month of CHC, but with non- disclosure note not to sue,
another health board.Ombudsman next process in the line
Mrs Clark
Thank you for your reply and I am wishing you all the best for your IRP meeting.
I think you are doing the right thing in getting professional advice before the meeting. In hindsight, I wish I had done the same thing before the IRP as like you I have been leading the case for 8 years and feel too close to it.
What I have found throughout is that even though the DST domain ‘scores’ indicate ‘primary health need, the CCG and then the IRP apply what they call their ‘professional judgement’ that the interaction between nature, unpredictability, complexity and intensity was not sufficient enough to justify CHC. In my late father’s case, and likely to be the same with your father’s needs, this is because the interactions were ‘well managed’ by the nursing care received and the interventions provided. Without this, my late father would have been admitted to hospital more frequently, against his wishes, and would have basically cost the NHS more money (£650 per day I believe for each day in hospital).
The assessors chose not to apply the ‘well managed need is still a need’ test in their decision making, and do not take into account the family evidence either …conveniently so I believe.
So, if you use a CHC assessor, I would ensure they know how to make a compelling case for the 4 interactions to work in your favour.
I have now sent my Complaint on this basis to the PHSO though not expecting a positive response…have you seen the reviews about the PHSO?…all 1 star and so much negativity about their role and bias towards the NHS.
Please keep me posted regarding your fathers case. Good luck and fingers crossed.
Best wishes
Mike
https://www.dailymail.co.uk/news/article-8793281/Rear-Admiral-launch-5bn-lawsuit-force-NHS-fund-elderly-patients-long-term-health-costs.html
Does anyone know more about this?
Hi Mike,
I have indeed employed a consultant and I cannot tell you the absolute relief I feel at having him on board. He is in fact a retired Senior nurse, who was involved in numerous MDT meetings in his career, he’s also an ex pilot, he successfully overturned his own mother’s appeal, but more importantly he knows the NHS framework inside out, has helped numerous clients, and is eloquent and articulate in his knowledge and summary findings report, and I am a published children’s author, so I’m not too shoddy at English myself, and I’m impressed with his presentation skills. I am just submitting my appeal for IRP so he has helped make that watertight to ensure it cannot be rebuffed, and is then compiling the full case for the eventual hearing, and for a great deal less money than numerous solicitors, and I do feel I have the personal touch from him.
May I suggest you get an assessor or similar to I have, someone who knows the framework but also the nursing, you can post a job on Linklden or google CHC case help. It is his skill with applying and referencing the framework that is invaluable along with being able to interpret the 4 key indicators properly where a lay person struggles.
I wish you well, and great success
Mrs G Clark
It’s great that you have found someone who knows their stuff – we also provide independent consultancy guidance advice and advocacy support for anyone who requires it. Please contact enquiries@caretobedifferent.co.uk Kind regards
Indeed you do… you have an excellent reputation and an excellent website, however I was quoted several thousand pounds by your company just to assess the case, that’s a substantial amount of money, for an evaluation, which I understand is necessary in a large case, but for smaller cases it may be worthwhile for yourselves to offer different degrees of help to the varying needs of your clientele, as well as perhaps some standard templates for sale. I thank you however greatly for the best website I’ve found with the most comprehensive information!
Some very useful suggestions thank you.There are various options available so if you would like to speak to us again please feel free to get in touch. Kind regards
Hello Mike,
I hope that things are going well with you.
I’m delighted to report that I have won this part of my father’s case. The IRP turned out to be a bit of a fiasco, the Chair himself was good, but the clinical advisor gave the panel the wrong advice re dates, eventually many months later and after many letters from my Consultant to the Chair, the IRP sent it back to the CCG to be redone as it was declared unsound.
I had been lucky that throughout my journey I had tape-recorded a lot of meetings with both the nurse assessors and the useless care home,I never taped them with the intention of using them as evidence but simply because I could never remember what was being said, and I usually had to relay it all to my brother.
But upon compiling my case with my consultant I came across these recordings and he advised me that the nurse assessor had not followed the framework for a higher score etc, amongst a number of other errors and blatant disregard for the law in multiple areas from multiple people, absolutely astonishing how many times people broke the law.
Anyway, on Friday I received a phone call from the CCG Director informing me dad has been granted as eligible for that period. So that part of the battle has been won.
We are now going back for 2 retrospective periods, as they “lost” the original paperwork which had duly triggered the checklist from a year prior to this period we have won, and their CHC nurse assessor had said then he would be eligible for 1-1 care, it’s astounding their arrogance and complacency, my father should have qualified for funding a year prior to this period we have just won, and I intend to get that done for my late father.
I can say this to anyone facing this CHC funding battle, because that’s exactly what it is. Tape record every meeting with everyone get their permission, put your phone on the table and tape the lot. And secondly get outside help, there is no doubt in my mind whatsoever that if I had not had my consultant I would have struggled to understand all the areas the CCG had made mistakes. Having outside help also feels like you have someone in your corner, who knows exactly how the game is played.
I suspect the CCG are worried I may go to the press with all the evidence I have of manipulation, incorrect procedures, making decisions about the MDT before it had been ratified etc and on and on.
I wish you well Mike on your journey, I really hope that you get justice, it’s abhorrent that we have to fight tooth and nail for what is fair and just.
I encourage you to get outside help with your case, and to never give in
And do please keep us all up to date with how your case is progressing.
All the best
Mrs Clark
I cant agree more .i wish i had recorded all stages including especially the meeting/supposed assessment with CHC nurse.
The local review had 3 CHC members and i felt bullied by one .He repeatedly refused to accept that the CHC nurse had not accessed all the relevant important records, despite the dates of when they were requested documented in her records as being 1year after the MDT
I thought it was her role to collect this information and even if i had they I’m sure would ignore it as they ignored everything we the family said .
They even persuaded the rep from adult care to agree with them at the MDT meeting . I held out for common sense to prevail at the IRP meeting but once again the CCG Nurse who had never met my relative felt she was very experienced in his condition having 2other cases with the same condition .
The specialist nurse who later submitted a checklist with well over the accepted levels for CHC funding was not even allowed to progress to an MDT . Despite her extensive knowledge of the condition and support from the consultant .This while process is an expensive way of depriving sick people of the care they need and deserve.it is also a waste of manpower .NHS CHC staff are attending numerous (not observing the patient) meetings with families whose time is precious due to there caring duties . It should be disbanded and taken back to the drawing board .
The Ombudsman should be very busy but i imagine many are so disheartened by the time they have been through an
MDT
LRP
IMP
they feel broken .
Social care is much on the mind of voters, hopefully they never have to ask for help from the NHS for a serious debilitating condition as they will fair fare worse .
Despondent retired nurse
I can only echo the comments that have already been posted.
My appeal to the PHSO was a shambles – the initial letter they issued was full of typographical and grammatical errors. They then went on to correct it three times and even then didn’t get it right.
The IRP was biased and had a member of the NHS CHC group who had originally been involved in the decision therefore a complete conflict of interest. This was pointed out to the Chair who herself committed an error and eventually I was awarded partial relief. See my other entries for full details.
Yes, it was a truly shocking waste of time.
I admire Admiral Phillip Mathias and hope he is granted a judicial review so have contributed to his cause by sending £25 to his crowdfunding site and would encourage anyone reading this to do likewise if they believe in justice.
Hello Mrs Clark
This is brilliant news and is an indication of your dedication and resilience to getting the right outcome for your late father. I appreciate you still have more to do with the protracted retrospective reviews, though I am sure you will be successful.
I made a complaint to the PHSO in September 2020 following my unsuccessful IRP outcome. Now, over 8 months later, the PHSO have not progressed the case as yet and are still at the assessment phase. I called them again last week and were told that assessments normally start after 14 weeks, though because of COVID – a general excuse now for inefficiency – cases are taking longer….what, 5 months longer!!! I have limited faith in the PHSO having also read the ‘Trust Pilot’ reviews of their service and outcomes which are NHS biased.
I will let you know what the final outcome is and if you think engaging your consultant would be worthwhile once all the appeal process have been exhausted.
Good luck with everything and please keep in touch.
Best wishes
Mike
Dear Mrs Clark, you wERE lucky , I was not allowed to record any meetings including the mdt or lr ! All the assessors said they would walk out ! Even The local resolution recording which the cgg agreed to do was ordered to be destroyed ( the chair admitted tgey change reports after presenting the final one to you… cheated at every turn. At the IR meeting the representative we found only said her name and title; she never said one word throughout! I think she was bribed somehow!
The chair was a ex lawyer hard nut as well… glad to see nhs framework of fairness and transparency in action.
Don’t ask me to clap for the nhs …please support the Admirals Phillip Mathias law case….
Dear Mike, yes unfortunately it is a complete waste of time; complaints are not taken seriously. As for the phso, We went through that last year; truly shocking waste of time; in the data I had they only took action in about 27 cases out of tens of thousands…. a tiny percentage.
Lets hope The Admiral Phillip Mathias can expose this Epic Scandal…when he challenges the govt… please support him as I have done.
With the lack of legal aid, and few legal firms are taking on cases against Authorities such as encountered in the complaints procedure…you can understand they have everyone stuck in a bureaucratic pointless slow loop of Frustration, with new cases added everyday…
Hello all,
Is there anyone on this forum that has actually been successful at the IRP appeal? If so, may I ask how you presented your case, and would you have a sample copy you would be prepared to share with others here, obviously with the personal information removed, I would dearly love to read a successful appeal, I have to get ours in by 7th October this year, can anyone please help?
Thank you so much
Mrs G Clark
We were successful at an IRP panel but our case goes back to 2009 and we had to employee a solicitor. You have to be prepared for the long run and not give in regardless of what the CCG advises or NHS or even NHS England advise. It took us until late 2018 to get paid out for part of the claim period and it still continues for the remaining period. I would suggest that you quickly contact a specialist solicitor on a no win no fee basis. They will guide you through the process and contrary to what NHS England advise and the CCGs the process is not straightforward and cannot be handled by anyone without a medical background. The CCGs do not want to help and the entire process is biased in favour of the NHS. Our mother required nursing care prior to going into a care home and yet she was not placed in a nursing home. The panel meeting will be only determined for a period of time eg in my mother case from 2009 up to her death in 2012. The panel do not take into account any condition that was prevailing prior to 2009 as in our mothers case. Our mother had numerous medical problems prior to 2009 and none of these were taken into account.
Good luck and challenge everything and ensure you get all the notes from everyone regarding case. The next thing will be that NHS England will want you to hold the meeting remotely.
Thank you Stuart, I do have a medical background of sorts so I’m quite well equipped with the lingo. For me it seems a corrupt system, the care home want the most money so that’s from us and not chc, and both chc and social services bat it back to us as well. If the care homes kept accurate records that would also help. I just wanted to know how to layout the structure whether the legal jargon is required all the way throughout… sort of a template really.
Well done though to you and your family it’s so unjust that you have to fight for what is correct x
Stuart,
If I may impose upon you one more time please. When you say make sure you apply the 4 key indicators to each domain, could I ask you to upload an example of how you phrased this for any one of the domains. I’m struggling on how to tie up the 4 key indicators on the Behaviour domains With my fathers aggression , and I can’t actually find an example anywhere, I just keep seeing use the 4 indicators I think it would be so useful to all of us on here, to see how you actually tied these into your argument. It’s not about the argument per se but rather how you weaved the 4 indicators into your argument. I’d really be most grateful for your assistance. I go to IRP on the 7th of October.
Thank you
Mrs G Clark
My brother and myself were recently advised that instead of a meeting that the IRP would now take place 1st september by Microsoft teams. I cannot see a change in leglislation to allow this method to be used. NHS England when questioned about this advised that this method was used since march 2020 but waited until recently to advise us that this would be the method used . When we questioned why we were not advised in March and yet they were unable to answer why. My brother and myself agreed for Bassetlaw CCG to obtain notes regarding our mother in 2011 and again in 2015 regarding soccial service and mental health records. Bassetlaw CCG then transferred the informatiion to doncaster CCG and they have refused to supply the information to us. They determined one period and actually agreed that we would be reinbursed for this period. and advised Bassetlaw CCG to reinburse us this period. My brother and were final paid out in late 2018 and we requested that our soilictors invoice be paid and also that given the time period interest at 8% should have been paid. Bassetlaw CCG advised us that the case was not exceptional and therefore they would not pay our solicitors fees etc however they inadvertently included an email from Doncaster CCG/purpoc team indicating that Bassetlaw were discussing for some unknown reason with the purpoc team as to whether to pay us the fees etc. It indicated that only in exceptional circumstances would solicitors fees be paid which our mothers case was. However they then advised Bassetlaw CCG that no one had ever been paid out there solicitors fees so therefore it is impossible not exceptional to get your fees paid. We are now proceeding with a claim for an earlier period and both Bassetlaw CCG, Docaster CCG/purpoc team /NHS England , NHS ,appear to be working together to prevent any further claim been paid. most people would give up. and that is exactly what they want. The entire process is biased in favour of the NHS.
Could all of us in this situation chase our local MPs? When our family’s saga began I was in contact with M Gove, and I am even more worried now as I have had one dispiriting standard letter back from M Hancock (all pre Covid). I realise they are otherwise occupied currently, but couldn’t all of us canvas all of our local MPs whom some of us in each constituency voted in (I did not vote for M Hancock incidentally)? Could we exert group pressure across the country and/or the UK? There must be so many relatives in this exhausting situation, surely together we have some influence?
Mike. Clark. how did your teams meeting go. we are fighting against doing this a we want a face to face meeting. We were advised that quarry house in Leeds was closed however we found out that it was actually open. We have waited 10 years for this and my mother died in 2012.
After 8 years of fighting my now late Fathers claim for CHC funding, the Independent Review Panel is scheduled to take place this Thursday 30th July. The original date in March was rightly postponed because of COVID.
The Panel meeting is now happening ‘virtually’ via Microsoft Teams …obviously my preference would have been to attend a ‘face to face’ meeting though understand that this now the new way of working.
Does anyone have experience yet of attending these important decision making IRP’s this way? If so , what should I expect and are the meetings organised differently than before as a result? What happens to the paper evidence that is normally visible and available? Any tips will be gratefully appreciated. Thank you Mike
Good Afternoon; yes we went through The Irp; last year ;For The Chair they found a “battle axe” Lawyer; so little chance really; when something difficult came up : ( like cheating) no comment but refer to due process ;a Complete waste of time , In our case somebody in the chc doctored the original report significantly; blatantly cheated! So Irp “pick and mix “at a choice of reports…what facts they liked. Even so the Chair was strained at time!
No Democracy or honesty in this Country of Officialdom sadly.Even our Mp keeps quiet.
A democracy can be measured buy how well it responds and acts on complaints; make your own mind up!2.5 years on now at the Phso but since they only acted about a handful of times out tens of thousands! What chance.?
The People of this Country deserve better than this.
I have now received the outcome of the Independent Review for my late fathers CHC case going back to 2012.
Unsurprisingly, the IRP found that the original CCG MDT decision that my late father did not ‘qualify’ for CHC funding was, in the words of the IRP, ‘sound’! The IRP is the end of the journey for me and my family, after going through many DST’s and Retrospective Reviews over the past 8 years and the whole process has been exhausting.
What we find difficult in the IRP findings is the acknowledgement that my late father’s health needs were well managed at home by his 24/7 live in nurse, which the family paid for, and the DST domain scores – 10 out of 12 were either Moderate or High – meant he had primary health needs according to the CHC Framework. The IRP ignored this simply stating that in their ‘professional judgement’ these health needs were not ‘primary’.
What the NHS assessors and the IRP do not properly understand and accept is the CHC Framework statement ‘a well managed need is still a need’….in my late father’s case, his 24/7 like in nurse effectively managed his health needs and masked the seriousness of them. Without her careful and skilled support and interventions, my late father would have been hospitalised regularly during this period.
So, some learning for me and perhaps some advice for others going through this tortuous process for a relative in need who is being cared for at home:
– Keep extensive health records…note every example of your relatives condition and any changes that you see. Date and time everything.
– Don’t rely on GP notes and Social Carer notes definitely won’t help…for example a daily record of of your relative having a cup of tea or watching TV will actually work against you in a CHC assessment.
– This is a tough one…if your relative is unwell at home and the condition can be managed if you have a live in nurse, still call for an ambulance! I lost out at the IRP by my late father not wanting to go into hospital when he experienced hallucinations and syncopes and these were dealt with professionally by his home nurse. So, there were no NHS records of the extent and frequency of these attacks, despite my comments and real life statements
– Finally, if the DST MDT outcome states that your relative is entitled to Funded Nursing Care payment though is being cared for at home, then this is a complete fallacy as the FNC is only paid if a person is in a nursing or care home. The NHS here save money despite encouraging people to be cared for at home and not in hospital!
One final point:
The CCG employed an Independent Assessor to lead and facilitate the Retrospective Review, which my family found to be acceptable.
However, at the IRP the Independent Assessor turns up as lead representative for the CCG!! How can this be fair and impartial?? My protestations to the IRP Chair were ignored…..
Good luck and I wish you all well with the IRP.
Mike
Mike
I suppose in my case the fact they found my Mother had a CHC need for the last week of her life was something effectively saying you’ve got to be virtually dead to qualify.
Are you not going to the Ombudsman?p, Mike?
Thank you for your reply and support and sorry to read about your situation and the loss of your mother.
Yes, I am in the process of completing my complaint to the Health Service Ombudsman.
Thank you again.
Best wishes
Mike
My experience with the Ombudsman was not good.
The finding was full of mistakes and inconsistencies (21 pages) and when I raised these with them I was then sent a “corrected” decision twice both of which remained incorrect and they then refused to correspond any further with me.
A total washout and waste of time I’m afraid
Mike,
I’m so very sorry, truly for all you have been through, I’m in exactly the same boat, I built an annexe for both of my parents both who had dementia my fathers aggression could be off the charts, like you I managed him well and anticipated his needs and it counts against us, the same as a lack of notes. I’m due at the IRP on the 7th October but I’m not giving in, and may I please encourage you to do the same, please don’t give in.
The NHS which runs the IRP is not impartial however the ombudsman is. I encourage you to go to the Ombusdman, download the Pointon case if you don’t have it, in fact Mrs Pointin went one further and started to sue them. The more we let the CHC away with it, the more people will be unhelped. I like you did not call out the GP every 5 minutes as my dad would have been sectioned again, and the trauma for all of us was too hard too bare. We are punished it seems for doing our jobs well in a very unfair and corrupt system. Maybe take some time out and think things through.
Thanks for all your help and advice.
Thank you Mrs Clark for your positive feedback …..this is a great help and source of comfort after this tortuous 8 years of trying to influence the NHS to do what is right.
You also have provided wonderful support and care for your father and doing this at home too. The NHS contradict themselves by promoting their intention for vulnerable people to have their care at home and not in residential care, and then have policies, frameworks and funding arrangements that do not support this intention.
The recent MDT and IRP stated that my late father was not eligible for CHC funding, though was eligible for Funded Nursing Care, which is a complete nonsense as this funding only applies to those having their nursing care in a residential home. What a cop out!
I am in the process of writing my complaint the Health Ombudsman and I certainly will refer to the Pointon case.
Good luck and all good wishes for your IRP on 7th October.
Best wishes
Mike
Hi Mike,
Thanks so much for the reply, I’m truly so pleased you’re not giving in. I am like you, at my wits end and driving myself into the ground trying to get the case finished, what I am going to do is get a CHC ex assessor to run over all my casework and to see if they can phrase things in a more legal process, without costing an absolute fortune, I have found quite a few online just under the search CHC assessor specialist – that may help you as well. I have read some case examples online from Compass, which were interesting to read, but they are very expensive to hire. We shall all have to keep motivating each other, keep passing on good hints and tips to help each other out, as it feels like we are a little community of underdogs fighting for justice for the parents we loved dearly. I shall keep you informed how it goes, and I wish you great success in getting your appeal to the ombudsman approved!
Keep at it!
Warmest regards
Mrs Clark
I recently attended an Independent Review Meeting (IRP) Meeting for a retro-claim for my Father who had Dementia as well as other chronic medical conditions. The claim has gone on now for five years and my Father has passed away. We are going to pursue the claim – as the IRP said he was not eligible despite getting: criteria scores of: 1xSevere, 2x Highs, 6x Moderates and 2 x Lows, 0 x Other.
They refuse to accept that they should have paid for my Father’s care despite their reports saying that the Multidisciplinary Team (MDT) made the decision that he required go into a Nursing Home – not a Care Home.
As other people here on this blog, we have several ring binders full of Medical Notes, GP, Social Services, Hospital Records, Pyschiatric Reports and Letters, Nursing Home Notes – etc etc.
When discussing this with the IRP Meeting attendees – CCG People (Ex-NHS Nurses and an “Independent” chairman), they argued that – despite serious health issues, my Father’s Needs were not beyond “Routine Care” and there was nothing complex or unpredictable in the period of the claim – from 2010 to 2012. But witihn that period – soon after an assessment which said his Mobility Needs were “LOW”, he fell several times and had fallen and been hospitalised before even going to the Nursing Home, but because these records were not at the Decision Support Tool (DST) Assessment, and becasue the Home did not have his Notes, the Needs were all marked “Low”. the very next day in the Nursing Home Notes he fell, and kept on having falls over the next few months which resulted in a Hospital Admission – after which he never walked again and caught a Chest Infection – made worst by Dementia and COPD. He nearly died in 2012 from lack of mobility and malnutrition. This period leading up to this was said to be “Routine Care” and not complex, despite Behavioural problems and Severe Cognition problems.
When he entered the Home – he had not been assessed for Continuing Healthcare (CHC), and we had to pay for his Nursing Care. The first CHC assessment was not done until three months after he had entered the Nursing Home as a resident and was self funding.
The IRP refused to discuss the period prior to his Admission to the Nursing home -even to get some context of his Needs and why it was necessary for him to have Professional Nursing Care. They refused to discuss the fact that an Health Needs Assessment (HNA) was requested months before his final admission and that both Social Serives and GP Practice had failed to follow up on the HNA request,with the GP blaimng the failure on a Locum Doctor – who left the GP Practice, presumably with the responsibility of the HNA too.
Despite many of the first CHC Assessment Needs scores being increased, they still said what a wonderful Nurse Assessor the person was who chaired that first MDT Meeting in the Nursing Home. She ignored my father’s record of falls, COPD, Behavioural problems, assumed if a need was Managed, it was no longer a Need, and tried to make it look as if my Mother was to blame for my Father having to go into a Nursing Home, implying that she failed to look after my Father Properly – this was mainly emphasised by Social Services who suggested a Private Nursing Home specialising in Dementia – but after 30 minutes had called the Police as they couldn’t manage him, and then called my Mother to pick him up – 3 days early – leaving my Mother without any respite.
The IRP Report looked like it had been modified from a standard document template – as they called my Father Mrs Jones on some pages, has anyone else had the same feeling about the IRP Reports? The Report was very repetitive and kept repeating the same phrases over again in different sections. Does anyone think that the IRP Report is clear and well put together? It didn’t seem to clarify to me why they thought my Father did not have a Primary Health Need as they said indicated that he was in a Nursing Home for Accomodation and medical treatments were purely ancillary to accomodation where it was the other way around as he owned his own house. (White is Black, and Black is White?)
We are now compiling a complaint to the Ombudsman – does anyone have any experience of Ombudsman Applications?
It’s still government so would assume it’s still going to be instructed to be just as biased as the CCG.
Thank you,
Conrad.
We have just sent a complaint to the Health Ombudsman and wonder what the outcome of yours was?
The Ombudsman initially agreed with me that I had a case for the IRP to answer but then, for reasons which I do not fully understand (and I am a retired solicitor with, I think, reasonable cognition) sided with them. I have no confidence whatsoever in the whole of the appeal system.
We are still waiting and will keep you posted – thanks for troubling to respond and we would be interested to hear of other peoples experiences of the Ombudsman
Since posting the above I have read that a fund was set up for Retrospective Continuing Healthcare Funding but that it has been exhausted and there is no money left. If so, the process has become a hoax and should be exposed as such. It would certainly explain why the Independent Review Panel (IRP) condemned the obstructive CCG process but then denied my claim, because it would have cost the NHS money which they don’t have. Has anyone won before an IRP in the last three months?
Thank you but your link just confirms that many others are just banging their heads on their own brick walls. In “re-writing” the original DST the IRP, unlike the original Assessor, did not have access to the Care Home records because they had since been destroyed. I agree that their arrogance in presuming to know better than the original Assessor was truly outrageous. The IRP agreed that there was no evidence that either a Checklist or a DST had been prepared when mother was discharged to the Care Home. Nevertheless they ignored my point that paragraph 74 of the National Framework should operate and the CCG retain responsibility for her funding. Doubtless they would argue that, as they had marked her down, funding would not have been “appropriate”. I would like to have a Judge look at this matter but funds do not allow!
I have today received the result of the IRP meeting to decide on my appeal against the refusal of the CCG to grant my mother Retrospective Funding for the period between November 2009, when she was discharged from hospital to a care home, and March 2010 when she was assessed and immediately granted Full Funding. The IRP upheld all my complaints against the abysmal and obstructive practice and procedure adopted by the CCG during the appeal, but then effectively re-wrote the original DST, scoring lower in several domains and dismissing the four key indicators, which I consider specious, illogical and perverse. But where do I go from here? From what I have read I have no confidence in the Ombudsman who will surely just rubber-stamp the IRP decision. Were I a cynic I would conclude that the whole process is budget-lead with no regard for responsibility or duty and that the IRP procedure is complicit in this.
That seems like outrageous behaviour on the part of the IRP panel, John. This may help: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/
IRP…with respect to Retrospective Review of Continuing Healthcare (CHC), are there any restrictions about evidence to be used by this Independent Review Panel? My mother’s original claim way back in Sept.2012 was flawed by selective use of medical evidence and I am still waiting for a result from the “dissatisfaction” team who may well use the same tactics. I have well over 100 pages of evidence including GP, Psychiatric, Care Home and CCG notifications plus results from other CCG’s which are very revealing as to where the money has gone. Would the IRP consider exposing flaws in the system which lead to an incomplete and unfair review or is it the case that the IRP will select what they want from the CCG and myself and draw their own conclusions.
Kevin – the IRP looks at individual cases and is not (in itself) there to question the wider system in general (unfortunately). However, for any individual case, the IRP should certainly look at the process followed in that individual case and whether there have been breaches in process and/or in the law. The IRP must also review all relevant evidence, and we’re not aware of any limit imposed on the amount of evidence they should take into account. It should be everything that is pertinent to the case. The IRP will draw their own conclusions on a case but it must be based on the evidence they have – INCLUDING that provided by the family. This may also help: http://caretobedifferent.co.uk/supplying-evidence-for-continuing-healthcare-assessments/
Ask for training records in direct relation to Continuing Healthcare. If they don’t have them they can’t win in a court of law as they were not trained and negligent. 90% of assessors have not been trained in this specific field and thrown in at the deep end as one told me in a meeting. A judge in a court of law will want to see training records just like they rely entirely in court on expert witness statements or reports. If they don’t have the training and you can prove it they fail. End of story!
Three days ago I represented my late mother at an IRP which was requested last October. It took a few reminder letters before I had a response to my appeal letter, I think perhaps they were hoping that I would go away since my mother had died.
Having followed your advice, at the start of the meeting I did ask the panel about their qualifications and training, they were all very quick to tell me about their qualifications and years of experience, but they did not mention their training in relation to CHC.
The chair person summarised my case reasonably well and then asked me why I thought my mother should have qualified for CHC. I replied by saying that both in totality AND nature her needs were beyond the legal limits that a Local Authority could provide and were certainly not incidental or ancillary to her need for accommodation. I also pointed out the she had scored one severe four highs four moderate and two low needs, and that I was also disputing the drugs domain as I felt that it should have been scored as severe. I pointed the pannel in the direction of section 31 (establishing a primary health need) and suggested that as she already had been scored as having one severe and needs in a number of other domains and as such it was more likely than not that she did qualify unless they were able to give clear reasons as to why not. The chair was very quick to point out that it only says ‘MAY’. However, I suggested that I did not feel that I had been give VALID reasons as to why she didn’t qualify. The chair quickly moved on with no further comment.
We moved on to why I thought the drugs domain should should have been scored as severe, I explained that in psychological and emotional needs she had been scored in her medicated state and that this should be reflected in the drugs catagory. She was on antidepressants and antipsychotic medications along with other important medication, she lacked concordance and without her drugs she would most certainly have been at risk of relapse.
The chair went on to say that she had recently had a memo from the Department of Health relating to this, and said that they would not withdraw drugs. She offered no further explanation athough I asked why it was relevant as I wasn’t suggesting that they were likely to stop her drugs, and that the way this should be viewed is what would happen if the care were removed not the drugs. The chair again made no further comment. I emphasised that the words are there, written in black and white and that the NHS can’t change them just because they don’t like them. I felt that the pannel were not happy, but having read your book I felt empowered and stuck to my guns and will await the outcome, which from previous experience is not really optimistic. I feel certain that these reviews are little more than a paper exercise in an endeavour to prove that they have followed the rules!
Chris French
Thanks for your comment, Chris, and your feedback on the recent IRP. It sounds as though you argued your case well. (It is correct that 1 Severe score plus other scores ‘may’ qualify a person for full funding.) You’re right to ask for valid reasons why the previous funding decision was a ‘no’. Let’s hope the panel members do the right thing and follow the guidelines and adhere to the law in their subsequent deliberations.
An update on our IRP held in May: Our appeal failed. We are considering if it would be worth of while to try the Ombudsman. Can anyone advise if this requires a lot of work? Are we still likely to feel like we are banging our heads against a brick wall?
Helen – You’ll probably find you’ve already done all the work preparing for the IRP, so you have nothing to lose by contacting the Ombudsman.
My appeal has just failed at local level and the letter I received said I could appeal to NHS England. There were no timescales . Does anyone know how long you get to put in this appeal?
Elspeth – this should help: http://caretobedifferent.co.uk/nhs-continuing-care-review-process-new-timescales/
I attended an IRP yesterday. Present at this meeting was an independent chair, a social worker and continuing care nurse from the same region making up the panel. The CCG sent two continuing care nurses (the head and the nurse who did one of the DSTs) and there was myself and my two siblings. There was also an administrator from NHS England making notes. Both sides had submitted statements but these were not gone through, which is a pity because we had found some errors in the that of the CCG. The format the chair chose was to run through the procedural errors mentioned in our statement and then ran through where we disagreed on the DST levels. This probably seems reasonable, but it wasn’t quite what I was expecting, so I felt wrong footed, and felt I didn’t put our arguments about well managed needs in the behavioural domain across strongly enough. My concern was that the social worker and nurse on the panel probably have been attending the same training and benchmarking sessions as the two nurses from the CCG, and although they were independent in the sense they had no contact with our case, they perhaps were not independent in their thought about the National Framework and law concerning Continuing Care. I had requested the meeting be held in another region, closer to my home, but this wasn’t allowed.
Helen – there should have been health and social care people there from outside your area too. I wasn’t sure if that was the case from what you’ve written. You make a good point about those working within the system having potentially been trained to think in a way that leads to all these problems in the first place.
If you’re looking at what may have been done in the past specifically for people with Alzheimer’s, Helen, it may be worth contacting one of the national Alzheimer’s groups or charities – to see if others have asked this same question.
Thanks for sharing your story Sylvia. You have questioned whether families could work together on this. I am interested to know if any attempt at a class action re reimbursement of funds for people with Alzheimer’s has ever been made? It might save everyone time & money.
I am so sorry to hear of your situation Sylvia. The more stories I hear and the more I read, fills me with complete horror and disgust. I sent a detailed letter to the Chief Executive of Social Services, asking numerous questions. I stated that I am of a firm belief that they are abusing their powers and in doing so infringing my Mum’s Human Rights. I received a response, which is a first! They refuse to answer my questions until after Court of Protection have made a decision, obviously hoping COP will rule in their favour. I can predict what will happen then, they would inform me that they don’t have to answer my questions as i no longer have a say. It would not come as any surprise to me if the ruling went in their favour as I dread to think of the image they are portraying of me. Whatever it is has to be fabricated or as you say twisting things to suit, despite the fact that I have documented evidence and witnesses to incidents that have occured. IRP did not act in an independent capacity which continues the set pattern. I am so cynical now, which goes against the grain as I believe I am a very fair person and analyse from all aspects. HPO is my next stage. It is a dreadful situation to be in, we should be confident when approaching authorities that we will be treated fairly with transparency and honesty.
I am not aware of all the facts of your situation but I have through research obtained some information with regards to my Mum, maybe they would be helpful to you.
Section 6 of the human Rights Act – DUTY ON PUBLIC AUTHORITIES
It is unlawful for a public authority to act in a way that is incompatible with a Convention right.
Section 8 – a right to Family Life, this is a Qualified Right, limitation must be:
In accordance with the law
Necessary and proportionate, proportionality:- actions and decisions must be appropriate and not excessive in the given circumstances.
Alternative approaches to the problems that were less drastic have not been considered.
In other words don’t try to crack a nut with a sledgehammer.
I don’t know if your Mum has an Independent Mental Health Advocate to work with you in protecting your Mum’s rights and her best interests. I was never notified that this was an option by my mum’s Social Worker and found out through research. I am now exploring this option.
Maybe you are aware of the above, I know I am always so grateful for any help or suggestions offered, as it is a very lonely road we walk when dealing with NHS and Social Services. Good luck Sylvia, I wish you well.
Hi Linda – any progress?
Now 2015 still fighting. Still in the Court of Protection (COP) and still our mum’s rights ignored under the Mental Capacity Assessment (MCA). Last care home – serious service level failing, embargo on residents, 3 failed CQC reports, multiple residents with injuries of unknown cause and now accusations of abuse by me to my mum. MP and others have ignored all requests for help. Norman Lamb fielded me back to the LA who among other authorities including the CCG ignore and cherry pick the MCA and other acts regarding rights of our loved ones. I have sent photos of poor care to the HQ of the care home – they say all my complaints have been answered; they have not of course and they refuse to share injury reports with us. The CQC sent me and others to safeguarding, who sent us back to the care home, who have ignored all. Other relatives complained to the CQC out of frustration. A staff member was reported many times, who we believe went on to hurt 2 residents. He disappeared – no action. Another reported for threatening violence to a resident with a witness. Safeguarding said the home are dealing with this under their own disciplinary procedure – whatever that means. No answer. She was still working there recently as far a we know. Relatives pulled residents from the home; one died soon after – he had grade 3/4 pressure ulcers on both feet. To date our mother’s views wishes and feelings have not been sought or presented in the COP. Her OS did not see her for 18 months, has not spoken to friends family or others who know her views wishes and feelings, and I stand accused of abuse by care staff who have perjured themselves in statements. No one cares – restrictions in place for many months. The Act is a sham – no advocates available for carers and stonewalls from all in authority. Fighting for our loved one’s rights just makes us a target and if we get upset that is not allowed. The precious time left with our loved ones is sullied and tainted by the hypocrisy and suffering caused by so many sledgehammers who ignore the effect on the person – supposedly central to the process.
Which local authority is in charge of your mother? I have had the same experience with my sister
We’ve just heard that another of our clients has achieved success in obtaining NHS Continuing Healthcare funding – and this was at an Independent Review Panel hearing. So, although there’s a lot that goes on that shouldn’t in this process, people nevertheless are successful in securing funding via this route.
Maybe worth reminding your mum’s ‘social worker’ about the Code of Practice for Social Care Workers:
3.1 Promoting the independence of service users and assisting them to understand and exercise their rights;
3.2 Using established processes and procedures to challenge and report dangerous, abusive, discriminatory or exploitative behaviour and practice;
3.3 Following practice and procedures designed to keep you and other people safe from violent and abusive behaviour at work;
3.4 Bringing to the attention of your employer or the appropriate authority resource or operational difficulties that might get in the way of the delivery of safe care;
3.5 Informing your employer or an appropriate authority where the practice of colleagues may be unsafe or adversely affecting standards of care;
3.6 Complying with employers’ health and safety policies, including those relating to substance abuse;
3.7 Helping service users and carers to make complaints, taking complaints seriously and responding to them or passing them to the appropriate person; and
3.8 Recognising and using responsibly the power that comes from your work with service users and carers.
Thank you so much Martin for your kind advice. I have emailed the director of Social Services in December and copied in my MP, this was followed up by a letter this month. No response to date. I have asked for a detailed explanation as to why LA are prepared to accept financial responsibility for my Mother? Why they need to approach the Court of Protection? I firmly believe that both LA and CCG are abusing their powers. The fact of the matter is, I will not go away. My next correspondence to LA, will incorporate the details that you have provided me with. Once again thank you so much, I feel so alone and isolated in this battle but will not give up. If CCG and LA can provide me with a detailed response to my questions proving my Mother is not entitled to full Continuing Care funding with full compliance to their own legislations and the law, I would accept that. I know they cannot do so, hence their silence. This does not help my Mother whom they claim to have her best interests at heart, it is a disgrace and beggars belief.
I like you have been battling for my mum’s rights for years. Until there is a body where all of us can make concerted group efforts against this abuse of power and rights it will not stop. And our loved ones do not have the luxury of time – many stories about loved ones being long gone before any resolution that is too late for them. Check the case histories on the LGO sites re dementia sufferers cases etc. The charities and many others offer no practical help the last line is always see a solicitor. There needs to be a way of all of us in similar positions to be able to put a united front and battle the people at the top. But each area has its own rules and policies and do not follow government guidelines unless convenient to them – when they want us to do something they will say its government guideline, when it’s them they will say its only a guideline we do not have to follow. When my mum had early stages of dementia – I was always told whatever she said could not be relied upon because she had dementia, so her feelings wishes and beliefs were ignored as they still are. LPAs are supposed to be the legal mouth piece of our loved ones – anyone wishing to speak with them should speak to us as if we were them, but this is never respected – we just get accused of representing our own views because that’s what suits them.
Thirteen months on and still no progress, my Mum remains in hospital, due to my Mum’s numerous health problems including Alzheimer’s my Mum is oblivious to this. Reflecting on events to date, it beggars belief what we have endured. The two governing bodies that should have my Mum’s best interests at heart (NHS & LA) have failed my Mum. I won’t go into great detail as you would need hours and hours to read it. I am standing my ground, my Mum deserves respect, dignity and justice. I would be failing as her only child, should I not take this stance. One very important factor, if you do not have power of attorney, do so now. Hindsight is a wonderful thing and due to my Mum’s mental health I am unable to obtain this now. I will not be deterred, despite all that has been thrown at me so to speak. Numerous questions have been asked to both NHS & LA, they are selective and evasive as to what they answer, no surprise there then! After 11 months they finally realised that I was not giving up so produced their lowest attempt to derail us by threatening me with ” Court of Protection” for my Mum.
I contacted the IRP, returned the relevant forms that they sent to me. I never had any response what so ever. When I was threatened with the Court of Protection, I emailed IRP asking them if they were prepared to go forward with my Mum’s case and advising them that I had been summoned by CCG/LA to a ‘best interests’ meeting and we had been threatened with Court of Protection. No response. Two weeks later I emailed them again, referring them back to my previous email. I finally received a response stating that they had sought further information from CCG And have decided that it was not appropriate to arrange an IRP at this time. The reason given was that because the best interest meeting has made a recommendation that CCG complete their processes. NHS England therefore will take no further action on this case. No reference was given in relation to Health & Parliamentary Health Ombudsman I was advised to contact NHS complaints procedure.
I responded stating that I was very disappointed that no approach was made to me to obtain any detailed information, yet IRP felt the need to approach CCG to obtain information. I stated that this leads me to question the word ‘Independent’ contained within the tittle of Independent Review Panel. I asked other questions and stated that it is very sad state of affairs when NHS/CCG and LA fail to comply with their own legislation let alone the law. Needless to say I await to this day for a response.
I am now in the process of collating all documented evidence to sent to Health Palrliamentary Ombudsman. I am very cynical due to our experiences but here’s hoping justice prevails. If this course of action does not produce a positive outcome, I will investigate court procedures. I will go public with everything, locally and nationally as the general public should be aware of this national disgrace and people should continue to promote public awareness until this is addressed in Parliament. I do not want any family having to endure what we have. My health has been compromised due to the actions/inaction of NHS/CCG and LA. Thank goodness my Mum is oblivious to this. I will continue to seek justice, any feedback would be welcome.
Your case mirrors many people’s experience, Linda, and health and social care people frequently fail to abide by their own guidelines and their own rules. I suspect many have never actually read them. It’s no wonder that many families think about going public with all this. You make an excellent point about getting power of attorney; it makes things much easier – and I would urge everyone to get a power of attorney in place well before they need to use it.
Everything you say is true in my case too but not relating to CHC funding. Everytime I have dealt with an authority and asked questions they cherry pick what they answer, ignore specific answers and then accuse me of overwhelming them with emails/demands. I was taken to the court of protection and I am still fighting to keep my LPA, which did not help at all – as they just say you are not acting in the persons best interest. It’s their opinion so it must be a fact. They twist everything take things out of context and even when you have evidence that they are wrong this is also ignored. 6 saars were raised against my mothers home re health and care issues. We were excluded as LPA from most of them, and they did not follow best interest that is a legal framework. They say they have listened when they have not and disregard whatever you say to push through whatever it is they want for your relatives. Most decisions are money driven or they know they have screwed up, so want you out of the way even when they are wrong it is deflected back on us as LPAs. The LGO is not impartial as teams are allocated to each council so the same person at the LGO will deal with different complaints re the same authority. The LGO will say the authority acted reasonably if they appologise for flouting the law, as long as they have said sorry all the damage they have caused and the stress and misery for months even years and the knock on effects is wiped clean. All these authorities are self policing and we all know the results of that – even the police are self policing. The police admitted they lured my mum from her house in order to section her – as this can only be done in a public place – they did not contact me before as LPA or daughter or next of kin. This complaint went to the police complaints commission and they said they appologised, so that was that. My mum after being sectioned had 4 months of absolute hell and I believe she had a nervous breakdown on top of her dementia from being sectioned and carted off. Of course no one believed me except my family and no one helped her etc etc. They just said oh this is her dementia. It is terrifying the power these people have over our loved ones’ lives. Our loved ones hoped we would protect their rights by making us LPAs, but god help you if you try to exercise those rights. Our mother’s care home refused to let her change GP surgeries. So much for choices. Why did we want to change – we could not make an appointment with the GP without care home staff present – no appointments, no direct contact, no email with GP. We were forced to communicate to the GP via the home, the GP often did not get our correspondence, the GP also refused to accept that our mother was getting repeated UTIs (over 12 in 18 months) from what we feel was lack of personal care, lack of fluids, lack of care and not acting when we said she was infected. The GP surgery is self registered with the CQC, who are also not interested that this surgery is registered in the home itself – but has no appointments there, no opening times, no doctors, no staff, no phone access, no email access and is just a room with a notice on it saying treatment room. Is this really a GP surgery or an excuse to get funding. The home boasts on its website that it has its own GP surgery – NHS choices eventually removed this surgery from their web site – but the CQC ignored everything and said the homes CQC inspector was satisfied with the GP surgery meeting the self registered criteria – and no one would tell me what constitutes a GP surgery. The CQC started off saying to me this did not sound right and then did a complete u turn. They would not let me speak with the registration team and eventually hung up the phone saying that CQC were satisfied with this registration. The home’s CQC Inspector ignored most of my alerts re issues at the home. Impartial – no I do not think so. The authorities get away with things we as relatives and LPA would get hung out to dry for and have been. Now I have to face the next court hearing whilst the authorities put together their evidence against me. I have no legal representation, do not understand the court system and processes, cannot get legal aid and cannot afford a solicitor. Justice – you get the best justice you can afford. In my case I do not even know how to best defend myself as no one will tell me as I cannot pay.
Dear Silvia, I am speechless and filled with deep sadness and shock, are all these people sub human? I really think so!God will judge them in your presence; trust me its true, only then will they see the errors of their ways. They may laugh now and dismiss but one day it will come true, only then will they see the pain and misery they have caused. God bless you Silvia. You are wonderful v
Good Luck Linda. I admire you for having guts….I know that this driven by love for your Mum as have experienced similar …still dealing with it and will keep you posted…not tonight though as it is late.,Just wanted you to know there are people rooting for you. Stay strong . God Bless you and your Mum