This is Édbhinne - pronounced Eh-veen - who is 33 years old, and continues to defy the odds, despite the enormous challenge of regularly life-threatening health needs - and she lives a good life at home with us, in Oxfordshire. We're her parents, Clare and Graham.  

The local ICB is responsible for personal, social and healthcare needs, because she's qualified for NHS continuing healthcare, known as CHC status.

Our family is really no different to the many other families who have suspended their lives, in order to keep loved ones alive and to provide some quality of life for them. It makes the care package costs for the NHS significantly less than they might otherwise be.

While it's widely acknowledged that caregiving is demanding and fuelled by love for our family members, many unpaid carers find that the ongoing psychological and emotional strain of actually GETTING the support from Health and Local Authorities significantly impacts on our own health and mental well-being. Unfortunately, ours is just one of the many similar stories that are out there in our communities.

Édbhinne's status, in legal terms, for health and care input

Édbhinne is cared for through obligations that amount to a legal duty - the duty owed to everyone qualifying for CHC status. She has an acknowledged primary health need, and her care plan says that she needs a nursing service 24 hours a day.

Within those constraints, Édbhinne is much loved - happy, sparky and engaged with life: you can see that from some of the pictures below.

That 24-hr-a day nursing service has never been properly commissioned or delivered, however! There's a budget for it, sure, but it hasn't ever provided enough money to attract sufficient nurses (in terms of the number and skills) to do the work.

So guess who's had to fill in? 

Given that there was no support, I, (Clare, Édbhinne's mother), had to give up my career and was left to work out the medical protocols, write out detailed care plans and train the first team of nurses. 

The family is now expert in all aspects of Édbhinne's care, including extremely complex respiratory and epilepsy care. We titrate controlled drugs, insert tracheostomy tubes, insert naso-gastric tubes, flush porta-caths, give IV injections, diagnose chest conditions via ausculation (stethoscope) and give various chest and limb therapies. Most nurses, including District Nurses, are not trained in even some of these procedures, let alone all.

There has never been enough in the budget for her care to pay for the PERSONAL or the SOCIAL care input that her CHC status is supposed to cover for people with a 'primary health need'. There has never been enough for her to be able to go on any kind of a holiday, safely, for what is called 'respite' - respite from us, and the four walls of our home, for her - or proper respite for us!

During Covid-19, the family ended up doing all the nursing care 24/7 without a break.

This was done to protect Édbhinne, because there was no other viable option and it was done with the knowing acceptance of the NHS's ICB. Much as we love our daughter, there is no way on this earth that what we were relied on to do could be said to have been done willingly as volunteers in the true sense. It was done to protect her and ourselves, because there was no other viable option - and done with the knowledge and acceptance of the Integrated Commissioning Board (the old CCG).

The team of funded nurses is Édbhinne's lifeline - we are incredibly grateful for what they do and for the breathing space it gives us as a family. But the daily clinical nursing is just one aspect of Édbhinne's care and it still depends on us to keep it going when there are nursing shortages and there is a lot of other aspects that the ICB refuses to acknowledge have to be managed.

This includes being on call 24/7, being called on by nurses to assess her condition or direct strategy, liaising with GPs and consultants, attending appointments and advocating on her behalf with the council, the ICB and health professionals - all of which we accept doing. We have to chase up medical supplies, organise service and repair of medical and adaptive equipment and we have to attend to all the admin hurdles to accessing money - we do not have a personal health budget for Édbhinne.

Even when she's admitted to hospital for frequent respiratory infections, we have to go too, because the hospital staff openly admit to NEEDING our expertise. If no team nurse is available to care for her when she is hospital, we have to cover those day and night shifts also. Ward staff are not trained specifically, safely to care for her complex needs, even if they had sufficient staff on duty.

We've been trying - with the help of CASCAIDr - to get a proper person-centred, adequate care plan (in terms of content and value) out of the NHS Buckinghamshire Oxfordshire and Berkshire West ICB for years.

Why isn't she just cared for in a care home?

Some of you may have read about 'affordable care' policies: it happens sometimes that an organisation tries to say that it will generally pay no more for a package of care at home, than for a care home - so that if the family chooses to keep a person at home then the cost of a care home is all that 'they' can have - as if avoiding a fight in the Court of Protection about the person's best interests is the 'choice' of the family and discharges the funding body from its duty to the person. In those cases, it's generally the choice of the funding body, not to walk away and so they must still fund sufficient care for the actual setting in which the needs will be met.

Well, in our case - there IS no appropriate care home that our daughter can be placed in - none which would be willing to step up to take on the risk of trying to keep her alive and thriving. Nor, according to all of the medical professionals who have know her well, would this be safe or emotionally or psychologically appropriate for Édbhinne.  Although CHC assessments are supposed to be evidence-based, the ICB has refused to document the many doctors' and nurses' letters attesting to the importance of her being cared for at home. It doesn't seem to be enough that we or CASCAIDr remind the ICB that its decision-makers are obliged to 'address' this evidence, before they ignore it.

• Community care law says that when there is acceptance that there is no other way of meeting the need, the cost is irrelevant - because a duty to meet assessed eligible unmet need IS a legal duty. 
• The law under the Care Act is that the funder must identify a budget that is sufficient, rationally, based on real-world figures - ie the local 'quality' market rate for the right level and skill factor of care for the person's needs - nursing care, here. 
• The law under the Care Act is that an 'average' budget figure, generated by a computer, for a non-average person's needs, is only ever a starting point for a proper finalised budget. 

We have been advised that since CHC status is for people whose needs go beyond the scope of social services under the Care Act, it must include everything that the Care Act otherwise would and be subject to the same Human Rights and public law principles that govern care law. That is, that it cannot conceivably be the law that the NHS is somehow able to say 'Here is a fixed budget - you must cope within this, including giving up your life and your sleep and your sanity'.  

The surreal stance on her wheelchair rights

Édbhinne has a customised wheelchair that we bought, but the NHS wheelchair service refuses to service or repair a privately owned wheelchair. Instead, we must seek approval from the ICB each time a small repair is needed, which can be a lengthy process, and not ever guaranteed to succeed. Previously, delays in decision-making in this regard have left Édbhinne confined to her bed for five days during the hottest part of the year.

We purchased the wheelchair because the ICB's service refuses to supply a motorised one for anyone who is not able to operate the wheelchair themselves! That might make sense on grounds of safety, but there's an obvious problem here; the most severely disabled people, such as Édbhinne, will always be accompanied by family or a nurse who operates the controls, making safety a non-issue.

A motorised wheelchair is unarguably necessary due to the weight of Édbhinne's medical equipment, including oxygen tanks, suction machines, emergency equipment and medications. These additions make any standard manual wheelchair unstable and too heavy and cumbersome for safe pushing by anyone, nurses or otherwise.

So, by dint of this policy, we (or Édbhinne herself) are required to fund a new motorised wheelchair that fully meets Édbhinne's needs whenever she requires a replacement. This presents a significant financial burden, costing thousands of pounds each time.

We’ve been advised that this is a position that no reasonable ICB could hope to defend, and hence that it is indefensible and clearly amenable to judicial review.

The wider picture - the public interest

Édbhinne is one of the few people in this country who get a hospital service at home. But CHC patients in their thousands - whether in supported living or in residential or nursing homes, also need budgets that hang together and make sense. They need care plans that factor in their article 3, 5 and 8 Human Rights and which take real account of their emotional and psychological wellbeing, with regard to the full extent of their needs, not just their bodily functions. And of course the funding bodies must abide by the Mental Capacity Act, and come to proper Best Interests decisions.

As CASCAIDr says, even though the NHS legal framework is different to the Care Act, the government has chosen to integrate the two systems, and expects that there is seamless person-centred care for all, regardless of their funding status. 

So we think that it MUST be that the law of care planning for CHC patients is basically the same, or no less generous, and person-centred, than it can be under the Care Act. We think that bringing judicial review proceedings will establish that stance on the law, for all to see, but are shocked that it should really be necessary to go that far. 

So, please will anyone who is caring for any relative or friend under CHC status donate to this cause, in order that we may use Édbhinne's case to make ICBs grasp that public law care planning principles apply to CHC patients nationwide.

Please would you share this page now, too!

Our role in any litigation which may be funded

Édbhinne will qualify for legal aid for proceedings for judicial review about her care plan, when we can stand no more correspondence. 

The complication in her case is that we, her parents are separately entitled to restitution for the care that we have provided. Not all of it, of course, because we do much of what we do as genuine volunteers - as any loving parents might well do. 

But the fact that Édbhinne has had care from us that she should have had from the NHS, and that the value of that care (on any footing) adds up to a lot of money over the years, means it's been impossible for us to find a law firm that would take the case on.

We think that that is because it's hard, in legal terms, to work out whether, and if so, how that monetary claim for us, for the past, would affect legal aid for her. 

And of course, the value of our labour IS part of the cost of her care plan, even going forwards, because there is nowhere else she can be cared for, IN, other than our home, and we are of course not saying that we are unwilling to provide ANY informal care - that would not be in her best interests, and we will always be happy to care for her, in part.

We just want to be paid back a fair rate for the care we've provided when the ICB either would not or could not do its duty. Unjust enrichment is the basis of restitution.

An ICB whose managers make life-changing decisions for families like ours has no incentive to provide paid-for care when they are aware that – in the absence of adequate support - many thousands of loving families, nationwide, sacrifice their all to keep their loved ones safe, even if this means giving up work, giving up freedom, and working long, gruelling hours, over weeks and then years without a break – all of which would be contrary to Working Time rules, if we were unrelated and if normal workforce protections applied.

This overlap of the issues has come to mean that Édbhinne is effectively unable to take action without funding available, upfront. And that doesn't seem fair to CASCAIDr or to us.

When an ICB either won't or can't do its duty, and the benefit of family members' input, beyond whatever they willingly volunteered to do to meet the needs, is just taken by the ICB, they should be paid back a fair rate for the care they've provided. 

When there's no practicable option BUT to pay a family member, for skilled and unpredictable input, they should be paid fairly, then, too. 

Establishing those principles would create a life-changing legal precedent for all families whose loved ones receive care under CHC or Care Act rules, and who have been left to deliver the care themselves – as funding bodies slide into effective insolvency and arbitrary cuts are imposed." 

What we're fund-raising for, now, here, is funding for legal assistance regarding Édbhinne's own care plan, because she lacks the mental capacity to get it for herself. 

Our other daughter may have to be her litigation friend, in case anyone says we have a conflict of interest even in getting that advice and support with a pre-action letter. 

We want to raise £8500 to pay for advice and permission proceedings to get a proper care plan for Édbhinne. This will pay for her to obtain advice and representation from a private sector law firm/barrister with the necessary skills to obtain permission for a full hearing into the law and principles about CHC care planning.  

Thank you very much indeed for your attention and generosity - Graham, Clare, Édbhinne and the whole family.

* Any judicial review solicitors out there - private sector or legal aid funded - who can see how important this is for the whole cohort of CHC patients, and their families - no doubt dreading their next review, and struggling with inadequate funding in the meantime, please get in touch with [email protected] who will note your interest.