Read about Zara's experience of her mother’s Multi-Disciplinary Team Assessment…
‘Zara’ (for anonymity) has kindly contacted us to share her recent experience of a Multi-Disciplinary Team Assessment. We thought that it would be helpful to share her comments so that you can learn from her experience. Here’s what she told us…
“I was looking on the internet to see how to go about getting care funding for my mother, who is currently being cared for at home, and is funding her own care. She has a full-time live-in carer but the costs are very high.
I came across the amazing Care To Be Different website which gave me a lot of really helpful information and a great insight into NHS Continuing Healthcare funding. I didn’t even know this funding existed, and it gave me huge encouragement to read that there was something I could do to help my mother.
I recognised that she might be eligible for NHS Continuing Healthcare funding (CHC) as she has various ailments and conditions, including dementia, incontinence, no independent mobility and so needs hoisting for all transfers. She has various other complex needs, too. As her attorney, acting under an LPA (lasting power of attorney), I felt that it was in her best interests to be assessed, to at least see if she might be eligible for CHC.
First, I contacted her GP to get him involved in the process. I thought that, because he was familiar with my mum’s health needs, having known her for many years, he would be best suited to do the initial Checklist assessment and get it underway quickly. I was quite surprised that he didn’t seem to know very much about this area of NHS funding or even the assessment process, despite working in the NHS! However, from what I’ve subsequently read on the CTBD website, I understand this is quite common – most NHS and private GPs seem to have very little knowledge of this secret pot of NHS funding – if they’ve heard of it at all!
Anyway, he kindly assessed my mother and completed the Checklist screening tool and then he sent if off to the local NHS Integrated Care Board (ICB).
After only a few days, I received an email from the ICB advising that my mother had passed the Checklist and would be referred for a full CHC assessment. I was really amazed and, of course, pleased by how quickly the ICB reached their decision and notified me. The outcome letter explained what would happen next.
In preparation, I was asked to complete a summary of my mum’s needs across the 12 care domains and did so as best I could. I looked at the description in each of the domains and compared them one-by-one against her needs and writing my comments in draft as I went along, trying to make the description fit my mother, using their terminology. Completing the summary of needs was time-consuming and really quite overwhelming. Even though I thought I knew my mother’s needs very well, there was so much to think about and I wanted to be sure that everything I included was to count towards the decision to award my mother the funding. It was really quite daunting as she had so many care needs and it was hard to know where to start and how much information to include. I felt the pressure to ensure my points were sufficiently detailed so that nothing was omitted or incorrectly phrased.
I was then contacted by a social worker, and we arranged a time for her to come and meet my mother. I am pleased that I was able to attend and will explain what happened next.
At this meeting at my mother’s home, the Social Worker (I’ll call her ‘Jan’) advised that she was here to fight my mum’s corner and to see if she could help her get CHC funding. Jan also explained what that was. Of course, I was prepared because I had read up widely about CHC on the CTBD website in advance. She was extremely pleasant and we got on very well, but I was initially thrown and quite sceptical, because I had expected her to be batting for the NHS and not my Mum!
I introduced Jan to my mother. She briefly explained to her in vague terms as pre-arranged, why she was there. My mother has Alzheimer’s and I didn’t tell her in advance that Jan was coming over as I think it would have caused undue distress or confusion.
Jan had my written summary of needs and was asking my mother questions based on the various care domains about her daily care needs to try and verify what I’d written and also to listen to what she had to say. It was also helpful that I and my mum’s carer were there to fill in any gaps and provide useful additional information and to reinforce the key points I wanted Jan to note.
I found this preliminary meeting very informative and helpful. Jan skilfully asked my mother questions without distressing her. We had a very open and easy chat which lasted around an hour or so. As Jan had a very relaxed manner, my mum fortunately was put at ease and saw her as a friend, thinking she had been invited for tea!
Jan left the meeting with her notes and said that she would see us again at the full MDT assessment in a few weeks’ time. My mum was having a rare “good day” in which she gladly engaged in clear conversation, contrary to my summary of needs! Following the meeting, I sensed from Jan that my mother was unlikely to get CHC.
The ICB soon notified me in writing of the MDT date and told me that an NHS assessor would be attending with Jan. I had to change the proposed date and time as it was inconvenient, and they were happy to oblige.
Prior to the MDT, I called CTBD’s Nurse Advice Line and spoke to a wonderful specialist independent CHC nurse called Diane, who gave me lots of useful tips and advice about the meeting, what to expect and how best to present my mum’s case. We discussed each of the 12 care domains in turn and she gave me some really helpful pointers to use at the MDT meeting. This chat was invaluable, and I can’t recommend it highly enough if you are doing the MDT yourself without professional advocacy support. She was so knowledgeable, even without having met my mother. I left the discussion feeling more confident in my approach and the key points I needed to get across. Most crucially, her advice was to be friendly and polite, and not aggressive in an adversarial way.
The MDT took place at my mother’s home with me and my mum’s carer present.
First of all, the NHS assessor went with Jan and me to see my mother, who was in bed, before the meeting, to explain in loose terms why she was there.
After a few minutes, we all left mum in her bedroom and sat round the kitchen table. The informal setting, as advised by Diane, seemed to work well and the NHS assessor formally explained her role, CHC funding, and the purpose of the MDT assessment. As I had read up widely in advance on the CTBD website, I felt prepared as I could be to handle the meeting.
The NHS assessor had a copy of my summary of needs and the Decision Support Tool (DST) on her laptop. She went through each of the care domains slowly and carefully and took time to discuss my mother’s needs in detail with me and the carer. She then read out the closest description, before giving her indication of the level of need she considered appropriate. Jan was invited to comment after each section and either agree or disagree. We were offered the opportunity to comment, too, and supplement additional information. I did not feel rushed or get the impression that there was a pre-conceived outcome to possibly reject funding.
Without telling the assessors, I had already been through this exercise myself before the meeting and pencilled in my own expected scores. I was pleasantly surprised when the NHS assessor scored 3 levels of need higher than mine! I knew when to stay quiet and agree. She scored lower in one domain and even though I tried to give my reasons behind my scoring, she explained why the level of need wouldn’t be increased. In fairness to her, she did listen and said she had made a note to record my disagreement. We agreed the other domains.
The MDT lasted 2 hours and I felt that I had done the best I could to put my mother’s case for CHC forward. As advised by Care To Be Different, I had prepared for the meeting, been through the DST, read up on the descriptions and levels of need, and done the scoring exercise again myself the day before, to check I hadn’t missed anything. Doing it so close to the MDT was also a good reminder of what I had written, and my arguments were definitely enhanced by Diane’s additional comments based on her years of experience. Thank you, Diane!
Whilst I have nothing to compare it with, I think the meeting went as well as it could have gone. I felt the assessors had listened to me and the carer, and it was not just a tick-box exercise. It didn’t feel rushed and they seemed to take everything I said onboard.
Of course, it was emotionally draining and mentally tiring, as you have to fully concentrate. I was keen to put the best case forward for my mum and as accurately and succinctly as possible, yet without forgetting vital information which could swing the final outcome. At the same time, I was equally concerned that I (or more likely my mum’s carer) could make a comment that might underplay my mother’s needs.
In hindsight, it would have been far less stressful had I sought professional advice and support from Farley Dwek at the outset and let them do all the preparation and advocacy at the MDT. It would certainly have reduced the stress levels leading up to the MDT and I would have had professionals to fight my corner.
I am grateful to CTBD for all their information which helped me enormously, leading up to the MDT and on the day itself, and I hope for a positive outcome.
Thanks again,
Zara”
Reply from Care To Be Different
Thank you, Zara, for sharing your experience with us. Your particular experience of the MDT was, by all accounts, quite unusual, from what we generally hear from other contributors to our website. Perhaps ICBs countrywide are softening their approach, or yours was an exception! But make no mistake, ICBs have no interest in finding individuals eligible for CHC and depleting their budgets. We wish you luck with the outcome.
Why not tell us about your recent experiences of your MDT? Leave a comment below…
Here are some useful blogs for more reading around the subject:
Don’t pay care fees until you’ve read this!
What? You’re enquiring about care funding AND you’ve never heard of CHC!
Essential CHC Funding Advice for Individuals who HAVE or NEED One-to-One care!
Dissatisfied with your MDT outcome? Consider these potential grounds for appeal…
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