“If you have epilepsy, technology will enable your night time needs to be managed”

Technology can undoubtedly help people live a more independent life.

Some tech works to monitor specific people’s movements (will we be chipping people in the next decade, if it’s the least restrictive thing to do?), some to track activity of any sort, some to warn of factors that might suggest that all is not well.

Some tech works to call for help, if a person is conscious and capable of remembering to press a button say, on a pendant alarm, always assuming that they are physically capable of doing so, in terms of what’s just happened to them.

If, on the other hand, one is prone to spells of loss of consciousness from a seizure, or hypo-unaware episodes, from diabetes, or one has autonomic dysreflexia, or severe unpredictable asthma attacks or whatever,  it is simply not logical to suggest that having a warning about it in advance is going to make any difference to whether or not it happens. A warning will help manage the episode, of course – and that may help a provider to reduce staff ratios over a large group of people, without being negligent or neglectful. But only if there is someone there to respond to the tech and the tech is reliable. It is the consequence of the condition that needs to be managed, and some episodic conditions have severe consequences unless someone is on hand, very quickly. So the mere existence of the tech is not enough – rationally – to say ‘that will be sufficient’.

Epilepsy is an interesting example: sensor mattresses are able to take readings of bodily signs of a seizure and do that precious thing – alert someone to be on hand, quickly, with medication and comfort and protection.

That has undoubtedly changed the profile of night time care in independent living and in care homes, because staff who are awake are less crucial and staff who can be woken, by the tech, may now suffice, or even staff off-site, as long as close by.

That’s a model that can really work to normalise the lives of people who have unpredictable seizures. It’s telling for these people that Severe on the Decision Support Tool is not a level of need that it’s even possible to have one’s seizure’s mapped at, for Continuing Health Care eligibility purposes, as if the DH always knew that too many people would qualify, then, if that were even an open score for MDT professionals. So most people with epilepsy get stuck in High for the domain of Altered States of Consciousness (the few who are scoring Priority, already likely to be in a semi-hospital environment) and do not qualify for CHC, not, at least, without other issues attracting Severe scores…

Any provider taking on the care of people with epilepsy needs a kegally literate insurer, who understands that people can and do die suddenly, without negligence necessarily being involved.

Tech, to some extent, minimises the risk, but tech that is not attended to will lead, ironically, to a higher level of legal concerns, on the footing of say ‘if only the maintenance and inspection schedule had been more frequent’ or ‘if only the staff on duty that night had not been so busy on other clients’, the harm would never have occurred. So any provider, in any setting, involved with people with epilepsy, must take all practicable steps to resource the responsible use of the tech, if going in that direction.

Who is it for, this kind of myth-based thinking, then?

Assessors are not able to say ‘Because you now HAVE the tech, we can treat the client’s needs as met in future, with a sum that bears no rational connection to the needs’. The Perry Clarke case is an example of that kind of daftness – with commissioners with clinical skills (a rarity in itself, and a good model, in theory) asserting that what with the gentleman’s nighttime seizures averaging 3 a month, a budget one third of what had been required by a provider for the previous 4 years, would suffice.

Evidence from a specialist neurologist and an epilepsy nurse documented active epilepsy, night seizures and risk of status related to stress and any non-compliance with medication, and injury from falls and 1-2 unpredictable tonic clonic seizures a month.

The provider’s evidence about its provision included its bespoke alarm system, staff trained in all emergency medications administration, and highly skilled management of prolonged seizure activity with access to 24 hour support and monitoring, including waking night staff.

During the pre-trial period, the council raised the allocation amount a little and said that Mr Clarke needed “Waking night support for 3 nights per month, in anticipation that your client will have up to 3 seizures a month during the night”.

Instead of accepting that the provider’s business model of charging per week was valid in relation to the need for 24 hour support, the council purported to assess as an appropriate response to the above profile of need, the following TIMED services:

  • Support for 3 hours for 7 days a week to assist him with taking medication, meal preparation, eating/drinking and showering and bathing
  • Support for 3 hours a week to assist him with cleaning, budgeting and managing bills and correspondence.

The council purported to allocate money for these needs at a level of £661 a week as a direct payment. The council did not consult the claimant before producing the updated plan; nor had it explained how it evaluated the claimant’s needs to produce the weekly figure of £661.

The council did not call for its own independent evidence, from any consultant or other experts in the field of epilepsy treatment or care. Although it had available to it the opinions expressed by the claimant’s consultant, GP, epilepsy nurse and care provider it effectively relied on the judgement of a social worker who did not claim to have any medical skills or qualifications.

The provider, said this:

“A waking night’s staff allocation for three nights a month would put Mr C in danger as it is nonsensical to suggest that assistance with medication is only needed some of the time. Additionally, his seizures are not limited to nights. They are whilst sleeping. This puts him at risk of death. So, he could easily (and often does) have a seizure whilst sleeping in the morning or early afternoon. That is why he needs 24 hour care. Sleep in support would not be able to respond to a seizure in time.”

The judge held in favour of the man and said this:

“In my judgment the assessment by the defendant demonstrates a failure to understand and address the claimant’s medical and support needs. This is most apparent in the approach adopted by the defendant to the provision of support to provide three nights waking care a month against a background of medical and other evidence which demonstrates the need for 24 hour care in circumstances in which seizures, including sleep related seizures are unpredictable and cannot be pre-determined. The explanation as to the basis upon which three waking nights care a month are included within the package as offered in the hearing before me simply does not make sense and does not address the needs identified in the reports from the medical and other professionals.”

Purchasers (commissioners, that is) often think that if tech exists, then the provider should be ‘incentivised’ to invest in it by being offered less money, on the basis that competitors are doing so too, and the commissioner is able to go elsewhere UNLESS this provider falls in to line. That’s a great example of why we’re in the state we’re in, we think, across the sector. If a provider would need to invest to a significant extent, in order to be able to make changes, but has no money to do so, then cutting the going rate, by use of a dominant purchasing position, isn’t logically, commissioning for sustainability. It’s commissioning for market failure.

In any market based situation, the number of placements or care packages that the council NEEDS to buy to discharge its own duty is the base line for the thinking about how to do this. If one is the Hertfordshire council and CCG, for instance, it is foreseeable that a lot of people coming out of St Elizabeth’s – a specialist setting there – are going to want to stay in the area, and more than just the few who need specified accommodation with continuing ordinary residence responsibilities being shouldered by the clients’ previous councils.

In such an area, an innovative thing to do, to foster competition and new entrants to the market with the necessary skills to offer viable alternatives, would be to offer a development prize for any providers who might like to invest in tech, to see which will then use the tech most advantageously – a best value approach, to get quality AND competition back into the provider market.

We do not think that that is unlawful State Aid but will no doubt be put right by others, if it is…