My mother is currently in a residential home in South Gloucestershire, initially due to her advanced dementia,I am therefore her ‘representative’. Her needs have increased to a point where she needs a nursing placement at the request of her current home. I asked if they could get the CHC Checklist completed as I had read it and believed she could well be eligible. (Thus far she has been self-funding). I achieved a successful Checklist assessment but not one of the departments involved followed the Framework and Practice Guidance. I will list those that I am fully aware of:
1) The District Nurse visiting to dress her pressure ulcers was asked about completing a Checklist assessment and the carer was told ‘we don’t do that, it’s only for end of life’.
That is incorrect. I emailed and complained. Apparently it was a ‘misunderstanding’!
2) The home manager emailed to say the Checklist had been completed but mum did not qualify. I emailed the CCG and asked to see the completed Checklist. The reply was that they do not keep copies of negative Checklists.
Practice Guidance PG 22.3 states that they should keep copies as they may be asked to reconsider their decision.
3) I requested the information from the District Nursing team (Sirona Care and Health). The care home manager emailed to say she had the results and could I make an appointment to go over the findings. I found that she had been forbidden to permit me to see the Checklist as I only had LPA Finance. The Checklist had been completed ‘over the phone’!
PG 5.7 Where an individual lacks mental capacity to consent to sharing personal information a ‘best interest’ decision must be made regarding the need to share information with third parties.
PG 5.11 There are a number of situations where a 3rd party may legitimately be given information so long as the above principles are followed. Some examples include: Someone making care arrangements who requires information about the individual‘s needs in order to arrange appropriate support. (ME!). Someone with an LPA Finance or any other person acting in the person’s best interests to challenge an eligibility decision(ME!)
PG 20.1 ‘they can have an advocate or other support (such as a family member, carer or friend) present
PG 23.1 The Checklist asks practitioners to record references to evidence that they have used to support statements selected in each domain
PG23.3 Whether or not an individual is being referred for full assessment the completed Checklist should give sufficient information for the individual and the CCG to understand why the decision was reached.
If the CCG don’t keep a negative screening, who knows what the criteria were that meant my mother was deemed not eligible for progression to the next stage?
I complained to the CCG, the CHC and my MP. Within a week a meeting was organised at my mother’s residential home in order to explain the Checklist results. Thankfully I had more information from the doctor and the care home owner was present. This additional information tipped the balance and my mother was found to be eligible to be considered for CHC funding.
I was asked to sign a form the following day and I requested a copy of the completed Checklist only to be told they are scanned and saved but the CHC team don’t give out copies. Again, this is in direct contravention of the Practice Guidelines
PG 21.1 ‘The DH patient information leaflet on NHS continuing healthcare should be given to the individual.
This was not done in fact no one, including the District Nurses or the GP have ever seen such a leaflet and didn’t know they existed. They should be available in all nursing and residential homes as well as doctor’s surgeries.
Also in PG 21.1 ‘Whatever the outcome of the Checklist the individual should be provided with confirmation of this decision as soon as reasonably practicable. The written decision should include contact details and the complaints process.
The decision is a positive one, thus far, but I have received nothing in writing!
Furthermore PG 21.1 ‘The rationale contained within the completed Checklist should give enough detail for the individual and their representative to be able to understand why the decision was made. Therefore, a copy of the completed Checklist, together with a covering letter giving appropriate details for challenging the decision will be sufficient to constitute a written decision in many circumstances, provided that the completed Checklist or other documentation includes sufficient detail for the individual to understand why the decision was made.’
I received no information and no letter at any point.
Several friends categorically stated when I said that I was going to apply for CHC funding for Mum that ‘you don’t stand a chance’, ‘no one gets that in Bristol’. If that is true, which it appears to be, there be many reasons:
a) No one knows it’s available as there are no information leaflets anywhere
b) You’re told that it doesn’t apply to you
c) The Checklist is carried out incorrectly without the correct people present who can provide evidence
d) You’re not allowed to see the actual Checklist outcome so can’t question it.
e) Unless you know the Framework and Practice Guidance inside out, you’ll never get it.
The whole process is fraught with lies, misinformation and distraction. No one over the las few weeks have been any help at all. I have had to fight my way through this far by reading everything I can lay my hands on and questioning every decision. It’s a farce!