We tend to think that it is just the elderly and infirm in our community who have healthcare needs, whether through natural ageing or the onset of a specific chronic and challenging long-term illness, advanced Dementia, Alzheimer’s and Parkinson’s.
However, it is easy to forget that FREE NHS Continuing Healthcare Funding (CHC) is available to anyone aged 18 and over who has a ‘primary healthcare need’ – ie whose main need for care is due to complex and challenging health reasons, rather than social care.
Individuals may be entitled to CHC as a result of a disability, accident or illness. The assessment process is complex and the bar to achieving CHC is set very high. We wonder how many thousands of families with young adults over 18 with challenging healthcare needs are missing out on free NHS packages of care for their children?
For more information as to Read our blog: Who is entitled to CHC?
We came across a scenario recently concerning care for young adults which we wanted to share with you. It concerned a young individual (let’s call them ‘C’ for anonymity) who suffered life-changing head injuries, leaving C totally reliant on 24 hour round-the-clock care.
After turning 18, and following a lengthy period of recuperation, C’s mother, ‘Mrs Z’, was successful in obtaining NHS Continuing Healthcare Funding for C’s intensive healthcare needs. C spent many years in a rehabilitation care home, before the Clinical Commissioning Group (CCG) agreed to provide an extensive CHC package of care to meet C’s complex care needs, via an approved care agency, so that they could return home to be cared for.
C remained at home for about 2 years being well looked after and seemed to be doing much better under their mother’s constant watchful eye. However, the cost of CHC care at home was undoubtedly expensive and far more so than if C were placed in a residential care/nursing home.
The appointed care agency in situ gave notice to quit, which meant the CCG had to act quickly to provide continuity, so that there was no gap in C’s care needs. Instead of sourcing alternative carers (which would be the obvious thing to do), the CCG insisted that that they wanted to put C back into care once again – just as an interim measure – until they could look for alternative home carers.
Naturally, Mrs Z was sceptical as to the CCG’s ulterior motives. The logical conclusion was that the CCG’s ruse was primarily all about saving cost and clearly not about C’s well-being, or what was in C and the family’s best interests. She was distraught with the CCG’s callous, unsympathetic and thoughtless attitude, which seemed designed to cause her maximum stress and anxiety, to what was already a stressful situation. The thought of C going back into care and undergoing yet another lengthy battle with the CCG to bring C home again, left Mrs Z physically and emotionally drained and exhausted, and unwell. Her anxiety was compounded by the CCG’s bullish stance in their intended goal and that she was given so little time by the CCG to react and protect C’s wellbeing. She was overwhelmed by the realisation that she seemed to have so little power to stop the NHS machinery, seemingly conspiring against her to steamroll ahead with their desire to take C back into care, against her wishes.
However, as a concession, the CCG invited Mrs Z to find alternative carers to consider for their approval if she wanted C to remain at home. She did so, but the CCG initially refused to consider them, even though they were perfectly qualified to provide care at home for C’s complex and challenging needs. Why? The only implied explanation can be down to cost, and that it would be considerably cheaper for C to be placed in a care home instead.
Mrs Z argued that C was doing much better at home under her watchful eye and in her loving arms, where she could monitor the care being provided by agency staff. The proposed care home was an hour’s drive away, had suffered numerous COVID-related deaths and had very restricted visiting rights. She feared that C would be left abandoned for days in-between permitted visits, in the hands of strangers. As a mother, she was clearly very worried as to what might go on behind ‘closed’ doors whilst C was out of her sight. How could she ever relax when she wasn’t around to oversee and monitor C’s care needs and be sure that C was being well-looked after?
She argued with the CCG that it was not in C’s best interests to be moved and she felt it would be a retrograde step and detrimental to C’s health. She had previously fought the NHS for so many years to bring C home, and once home and settle for nearly 2 years was doing much better, it seemed that the CCG wanted to negate all that – just to suit their budget (ie financial gatekeeping). This was a heartless and cruel step which seemingly did not put C at the centre of the NHS Continuing Healthcare process. Plain and simple – this was all about money, however disguised.
One of the underlying core principles of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised 2018) makes it clear that the whole NHS assessment and decision-making process is to be “person-centred” ie placed at the heart of the assessment and care-planning process. The individual (and their representatives) must be fully involved and placed at the centre of the assessment process and their view, aspirations and preferences are to be considered. The National Framework is littered with many references to this key approach – for example, see pages 10, 22 ,48, 98-99 & 164 to name but a few. What’s more, CHC Funding is about healthcare needs and so the CCG should not play ‘financial gatekeeper’ to deny funds just to suit their budgets – see pages 129 & 132.
Mrs Z sought legal help from Farley Dwek Solicitors to fight her corner and protect C. Luckily, the story ended well for C and Mrs Z, and the CCG ultimately relented and agreed to commission care for C at home from Mrs Z’s sourced agency. It is such a shame that Mrs Z and her family had to endure such stress, quite unnecessarily and were put through this ordeal.
What can you learn from this?
1. CHC Funding is not just for the elderly. Young adults have rights, too! CHC is available to all adults aged 18 and over. Apply for an assessment if you think that your child might qualify for CHC Funding.
2. Paragraph 63 of the National Framework (below) provides that care can take place in any care environment, whether in your own home, a care or nursing home, hospice or other care setting. The setting is irrelevant if the individual has a primary health need and meets the criteria for CHC Funding.
63. “NHS Continuing Healthcare may be provided in any setting (including, but not limited to, a care home, hospice or the person’s own home). Eligibility for NHS Continuing Healthcare is, therefore, not determined or influenced either by the setting where the care is provided or by the characteristics of the person who delivers the care.”
3. Arguably, forcing people out of their homes and into residential facilities, contravenes Article 8 of the European Convention on Human Rights, which enshrines the right to respect for private and family life:
“1. Everyone has the right to respect for his private and family life, his home and his correspondence.”
“2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.”
4. Insist on your child’s rights to care in their own home if you believe that is in the their best interests.
5. You MUST read the Gunter case (page 135 of the National Framework) and our excellent blog on the subject of care at home:
6. Make sure you have the necessary authority to act for your child. If they have mental capacity ensure that you have a Lasting Power of Attorney to enable you to make decisions on their behalf and in their best interests. Otherwise, the CCG or other body might have the power to interfere and make those decisions for your child and against your wishes, and what you believe is in their best interests.
If, however, your child does not have mental capacity to make decisions for themselves, take early steps to gain control of the situation and their affairs by applying to the Court of Protection for a Deputyship Order. This can be expensive and take time, so act quickly to avoid putting your precious child’s care in the hands of strangers.
7. Act decisively and get legal help if you need it. Remember, you don’t have to fight this battle alone. Browse our website for a whole range of free information and resources to help you, or contact our Advice Lines for more specific questions on care funding and the assessment process.
8. Don’t give up your rights and help spread the word!
If you need hands-on support with an assessment for CHC Funding for your child or have been rejected for CHC and want to know how to appeal, need advocacy, or just want to talk through your situation, please get in touch.
Quite understandably, many families going through the assessment or review process find it overwhelming and emotionally fraught as they fight for their child’s rights for CHC Funding. There is professional expert help available at all stages of the process. Visit our 1-2-1 Support page.
For young adults with complex needs, you may be pleased to hear of a unique service offered at: https://www.farleydwek.com/young-adults-with-complex-needs/