Here’s a recent question on Facebook page:
“Is it normal to be asked who is attending at the NHS Independent Review with you? I’ve said yes, someone is coming with me, but do I have to tell them who as long as it is not a Legal Representative?”
The National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care (revised 2018) states that you are entitled to bring a representative /advocate along with you to the Multi-Disciplinary Team (MDT) assessment, and to any subsequent appeal if your application for NHS Continuing Healthcare Funding (or ‘CHC’) is turned down. Therefore, you can have an advocate with you at the Full Assessment conducted by an MDT, at appeal before a Local Resolution Panel, or at an Independent Review Panel conducted independently by NHS England.
Your representative or advocate can be anyone you choose, but is usually a family member, friend or peer. But it can also be someone legally qualified, a nurse or other professional advocate.
You can, of course, try and argue your relative’s case for CHC yourself, and some families with patience, resolve and determination, do so quite successfully. See Admiral Mathias’ story below. However, given the high stakes involved, we recommend that if you choose an advocate, find someone who is fully conversant with the NHS National Framework, knows how the assessment process works, and understands your relative’s healthcare needs.
Some families who have tried their best to ‘go it alone’ have often become unstuck; perhaps overawed by the whole assessment process which is more complex and emotionally draining than they had envisaged, or else are out-manoeuvred by the NHS’s appointed assessors.
Failing to secure CHC Funding where it’s rightly due, could make the difference between your relative paying many thousands of pounds a month for their healthcare and accommodation, or else paying nothing at all!
You can be assured that most Clinical Commissioning Groups (CCGs) won’t offer to make your life easy during the assessment or appeals process. We frequently hear stories where the CCG have even tried to put families off pursuing their relative’s claim at all. Some CCG’s assessors may have a conflict of interest, trying to balance a fair assessment, whilst their allegiance is aligned to protecting NHS budgets.
However, having a specialist advocate in CHC Funding, fighting your corner, and being present to ensure that the assessment or appeals process is undertaken fairly and robustly, can be a huge advantage and tilt the playing field back in your favour. Of course, however good the advocate is, they can’t make someone eligible for CHC if they simply don’t meet the high bar to achieving this funding. Even so, even if your relative is found ineligible for CHC, at least you will have the peace of mind that you have done everything possible to make sure that someone else has independently overseen the process; and if the process is flawed, can then advise you on the merits and grounds of an appeal.
We applaud all those fantastic success stories and supportive comments from families who have been onto the Care To Be Different website and used the wide range of free resources available to help them to endure the mentally and physically exhausting battle with the NHS; or have chatted with others who have faced the same problems to get the answers they need; or who have bought the book How to Get The NHS To Pay For Care (kindly referred to by our one of successful contributors as the ‘bible’). Read our blog: Exposed: NHS Continuing Healthcare makes headline BBC News
But sadly, these success stories are few and far between, when compared to the overall number of families going through the assessment and appeals process, nationally. Some undoubtedly start out enthusiastically, but soon find themselves entrenched in a complex and emotionally draining assessment process, being worn down and frustrated at every corner by the NHS, in a subjective assessment process which often appears slanted in favour of the NHS. Knowing your rights, and how to present and argue your case coherently, may give your relative the best opportunity of securing CHC Funding.
Although the National Framework suggests that legal representation is not required, lawyers such as Farley Dwek Solicitors and their team of specialist nurses, have a wealth of experience in this area, and have been representing families for years, helping them through the assessment and appeals process.
The National Framework states that it is not necessary to appoint a legal representative, which is quite true, but of course they would say that! Understandably, the NHS don’t want a skilled advocate attending to support a family, and may be worried that a flawed assessment, or local appeal (which they conduct, too), will be swiftly countered.
One success story is retired Admiral Phillip Mathias, who fought the NHS for two years, spending more than 300 hours battling red tape, in an effort to secure over £200,000 for fees wrongly paid for his mother’s care which should have been funded by the Clinical Commissioning Group. Mr Mathias said that “Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent”. You can read his full story in our blog.
If you are ever told by an NHS representative at assessment or appeal that you cannot have a legal representative, then don’t be fobbed off. That is absolute nonsense! You are absolutely entitled to have anyone you choose to represent you, whether they have a legal background or not. However, although a specialist lawyer or nurse advocate will only have the same status as any other representative you chose, you will have the advantage of knowing that they have the expertise to argue your relative’s CHC claim.
The National Framework provides that “any individual is entitled to nominate a person to represent their views or speak on their behalf and this could be a family member, friend or peer, a local advocacy service or someone independent who is willing to undertake an advocacy role”.
Essentially, therefore, anyone can act as an advocate. It is not unreasonable for the CCG’s assessors or the Independent Review Panel to ask if you have appointed a representative to be present at an assessment or appeal. It is courteous, if asked, to provide the names of those attending, but you do not specifically need to state what (legal or other) qualifications they have. Some CCG assessors conducting an MDT can get quite defensive, and on occasion have been known to walk out of, or not proceed with an assessment if they think they are going shown up by a professional advocate. It should be of no consequence to assessors, as the assessment and appeal’s process are based on the merits of your relative’s eligibility for CHC funding, and not any preconceptions they may have. All advocates are of an equal status. They are merely presenting the evidence in support and to ensure that the assessment process is carried out robustly. The MDT assessors (or any appeal panel) cannot refuse to proceed if you bring an advocate along. You can remind them that The National Framework (revised October 2018) encourages it!
So, in answer to the Facebook comment, you are entitled to have an advocate, and it can be a legal representative, or indeed anyone else you chose. You can notify the Independent Review Panel in advance of who is attending as your representative, and it should not make any difference whether they have a legal qualification or not. All advocates are of equal status, it’s just that some may more conversant with the National Framework and how to best argue your relative’s case.
We recommend that you also read our blog “Can The MDT Panel Refuse To Proceed If I Have An Advocate?”
If you need one-to-one specialist support, then visit our web page for further details.