By Rosalind Hughes, founder, Just Caring Legal
Recently I acted for a couple whose adult sons’ withdrawal of NHS Continuing Healthcare left them with nowhere to turn. The sons have significant needs including severe autism and cognitive impairment, and extremely challenging behaviour. They require 1:1 care around the clock by specialist staff who know them well.
Having been in full-time residential care for over 10 years, the sons went temporarily to their parents’ home to shield when the Covid-19 pandemic struck. Both had chest infections and their parents, like so many, feared the effects of the virus. Then lockdown came, and the parents were unable to take their sons back to their care facility. And so they struggled through the pandemic caring for them around the clock, with no respite.
This has been an extremely challenging time for the whole family. There is evidence the sons have deteriorated in their mental health and behaviours. My clients are exhausted, depressed and burnt out. In June this year, they started work with the residential facility on a painstaking transition plan to ease the sons back into the care home with minimal distress.
Withdrawal of NHS Continuing Healthcare came out of the blue
The transition plan had the initial agreement of the CCG who fund these men’s care. But then, just as they were due to return full-time on November 1st, the CCG suddenly decided to pull the plug. No warning, no discussion, no consent. They wrote to the facility, without informing my clients, and unilaterally withdrew the CHC funding that makes this placement possible. It is impossible to describe the distress and devastation this caused.
Withdrawing a care package prior to a full review of care needs is contrary to both the spirit and letter of the National Framework for NHS Continuing Healthcare. A core principle governing NHS Continuing Healthcare (there’s a clue in the title!) is continuity of care. People must not be left without access to the support they need while the CCG carries out its decision-making processes. In this case, however, there was no process, no review, no evidence-based case for the withdrawal of care.
The CCG’s actions had consequences
There was no evidence the facility where these men had lived for 10 years could not continue to meet their needs. The four-month transition, in fact, had gone well, according to those who know these brothers the best. So it is hard to understand, from a legal or ethical point of view, why the CCG would suddenly pull the plug on this placement just as the transition was complete.
Their actions didn’t just leave my clients distraught. It led to an immediate and urgent safeguarding crisis for these two highly vulnerable young men. With their parents burnt out and no longer able to care for them, they were at significant risk of harm – and homelessness. Eventually, as the CCG refused to negotiate, the situation triggered a safeguarding enquiry by the local authority.
When is a safeguarding crisis triggered?
The authority has a duty to safeguard under section 42 of the Care Act if there is reasonable cause to suspect that an adult:
- has needs for care and support (whether or not the authority is meeting any of those needs)
- is experiencing, or is at risk of, abuse or neglect and
- as a result of those needs is unable to protect himself or herself against the abuse or neglect or risk of it.
Fortunately, the local authority immediately saw the urgency and precarity of these men’s situation and acted on our concerns. But it shouldn’t have to come to this. Two adults, vulnerable and with extremely complex healthcare needs, were left at risk because the CCG wouldn’t follow its own rules. Sound familiar?
Have threatened or actual withdrawals of NHS Continuing Healthcare left your relatives at risk?
The local authority safeguarding process is the lowest safety net possible. The fact that such crises are becoming far from uncommon suggests there is something going very wrong with the processes that underpin care.
Arbitrary withdrawals of NHS Continuing Healthcare are now widespread. Some CCGs are forcing through reviews and reassessments of eligibility, even where there has been no significant reduction in needs. Many people are losing their funding, putting long-held placements at risk. This is against the regulatory framework that governs NHS Continuing Healthcare. It is leaving many vulnerable individuals without the security and support they so desperately need. It throws our most vulnerable into complete crisis, no longer sure of even the roof over their heads.
If you are struggling with a threatened or actual withdrawal of NHS Continuing Healthcare, please get in touch. No-one should be left at risk of harm, homelessness or worse. Here at Just Caring Legal we specialise in issues around care and care funding. We spend many days at the point at which NHS care funding and safeguarding duties intersect, fighting for safety, wellbeing and peace of mind for highly vulnerable individuals and their families.
So if this is where you are right now, don’t let your relative slip through the safety net. Call or email us today for a free initial assessment of your case.