Day 8 Jessie’s Inquest: Sussex ICB

I just want to start this post with a thank you to those who fund my reporting, it wouldn’t happen without them. All of my court work is funded by crowdsourced financial support, I have no employer or organisational support for it. If you’d care to support my reporting you can do so here, thank you.

I also wanted to update on names of counsel, which I have only managed to confirm today.

Counsel for Jessie’s family is Ms Angelina Nicolaou of One Pump Court, the representative for Sussex Partnership NHS Foundation Trust is the Trust’s Legal Director Ms Rebecca Agnew, for East Sussex County Council is Ms Amelia Walker of 1 Crown Office Row and for Brighton and Hove City Council is Mr Martin Downs also of 1 Crown Office Row.

The first witnesses the court heard from on Day 8 of Jessie’s inquest were two witnesses from Sussex Integrated Care Board who both joined the court remotely on MS Teams.

The coroner apologised to the jury for keeping them waiting and told them that we would hear from two witnesses from the ICB. She explained that she would be “hot tubbing” them, a process where she takes two witnesses at once which enables the most appropriate person to answer her question, without having to take evidence from them separately.

The first witness gave an oath, she was Fiona Streeter. She told the court that she was not clinical, and her role was Associate Director of Commissioning Partnerships for East Sussex.

Her colleague wasn’t asked to swear an oath or give the affirmation, which I assume was an oversight. She gave her name as Dr Amy Dissanayake and her role is Medical Director at NHS Sussex ICB.

The coroner started by asking them to describe the role of the ICB. Ms Streeter said that she would be happy to take that question, but first wanted to start by offering her condolences to the family in this case. The coroner said they were struggling to hear her and she said that she would speak up.

Ms Streeter told the court that she would provide a brief introduction to the role of the ICB. She told the court that NHS Sussex, the Integrated Care Board in Sussex, oversees the local NHS and supports different NHS Partners within it, hospital trusts etc, and makes decisions about how money is best spent for their priorities.

She told the court that involves leading improvement and integration of health and care services for communities… taken on commissioning functions, previously, taken on from the CCG.

She said commissioning involves assessing local needs, deciding priorities, funding requests and buying services on behalf of populations from hospitals, clinics and so on.

Ms Streeter told the court that the ICB is not involved in day to day management of cases, whilst they may approve funding requests they rely on clinical expertise to recommend these.

Coroner: Who is it that fixes the funding you have available, you hold the purse strings so to speak, who is it that determines the amount of money you as an ICB have?

FS: The amount of resource we would receive is allocated nationally to us

Coroner: By the government?

FS: Yes

Coroner: Do they specify how you spend that money? Do they say this is your pot, 20% must go on mental health services 20% on GP services … as an example, who decides how the pot is split?

AD: I’ll come in, I think this is a really important, but incredibly complex question.

Will be multiple different priorities and ways of deciding how the money is allocated comes from, for example, GPs is primary care nationally negotiated contract called a GMS Contract, decides how much money goes to the practice, but also are other arrangements nationally and locally for additional services that wrap around that.

With regards healthcare in other settings [missed] some flexibility to look at own population and decide how that money is best spent, will be in different settings some defined targets or areas of focus and priority areas recognised for systems to respond to.

Coroner: OK, we’ve heard that Jessie, we’re calling Jessica Jessie for the purpose of these proceedings, we’ve heard when she was discharged from hospital into a property we know as Viaduct Road, funded jointly between yourselves and East Sussex Council. Firstly can you confirm that was the case?

AD: Yes, the usual arrangements is for the local authority to lead on the arrangement, but its funded 50/50 between the LA and health

Coroner: OK, when that person is having that provision provided for them, for which you are paying 50% do you exercise any control, or are there any specific requirements you put in place from the ICB side?

No immediate response.

AD: Fiona do you want to come in on that?

FS: I think from my perspective that’s not something that sits within my role ma’am so I don’t feel best placed to respond to that specific question

Coroner: So you don’t know, when you provide that provision, if you maintain any control?

FS: I would have to seek advice on that, it doesn’t sit within my role

AD: Yes, our understanding for Section 117 placements, that is led by the local authority

Coroner: So you purely fund it, you don’t input into what that provision looks like? You just pay the cheque at the end of the day?

AD: We liaised with Brighton and Hove Council and confirmed that was the case there, and our understanding is it is the same in East Sussex as well

Coroner: Following the death of someone in a facility there is a Serious Incident Review carried out, from which recommendations may follow. One recommendation was Sussex Partnership consult with the ICB regarding a thematic review of the neurodevelopmental pathway to inform [missed] and enhance patient outcomes.

It was provided to you, so you knew that question was coming, can you tell me has that consultation taken place and what is happening as a result?

FS: Undertaking Sussex All-age Neurodevelopmental Pathway Programme, as part of that we have worked with stakeholders including Sussex Partnership to develop plans to improve the pathway for people with neurodevelopmental needs.

Sussex Partnership, and the local authority as well, alongside other partners and stakeholders have been fully engaged in this work since the beginning of the programme, actively participated in a series of stakeholder workshops to develop plans, have ongoing and regular engagement with the system programme through regular meetings and targeted work.

Plans are currently being finalised, thinking how best to make use of resources across whole neurodevelopmental pathway.

I can say something about the key areas if helpful? [missed]

Coroner: Would be helpful, particularly any information you can share with regards to those who suffer with autism.

FS: The work itself is predominantly focused on people who have needs related to autism and ADHD, key areas of focus.

Plans currently finalised include the following areas:

Focusing on more needs led approach to support people with neurodevelopmental needs isn’t dependent on diagnosis but still ensures assessment and diagnosis is accessible for those who need it

This also would include work with school and education to support needs led approach for people, to ensure support is available to young people when they need it.

Develop plans to train a wider number of practitioners, those beyond those who’d support people from a specialist perspective.

That in turn would enable improved access to specialists for people who may be more complex.

Also thinking about an every contact approach [missed].

Another aspect is improving access to early support to people, may be provided from range places including the voluntary sector and also streamlined approaches to referring for assessment, and for assessment and diagnosis itself, and post assessment.

Lastly the other area probably pertinent, is work across the system, organisations, that would further include more development of neuro-affirmative approaches, ensuring our services are as neurodevelopmentally friendly as they can be.

Coroner: OK, one final question wanted to ask you, the jury heard from East Sussex County Council that they really struggled to find accommodation for Jessie on her discharge from Mill View. Sadly Jessie died before that discharge took place, they were struggling to find provision for her. This lack of provision, is it something you’re aware of as the ICB? There is a lack of provision for those in Jessie’s position?

No immediate response.

AD: Do you want me to come in?

I think it’s a challenge that’s probably recognised nationally, obviously there’s been a huge amount of work through the Transforming Care Programme, that started probably ten years ago now, where being able to identify more suitable place for autistic people to live, as well as people with a learning disability, more community based than what used to be considered institutional settings.

Big programme of work around that, but I think always need to understand individuals’ specific requirements. The staffing and care that’s needed to support them in different environments, that’s an ongoing piece of work happening, not only in Sussex but elsewhere in the country as well.

I think it’s a challenge which is there and looking for ways to be able to make sure is personalised to what that individual needs is one of those goals from the work being undertaken.

Coroner: I have to ask you this, the fact that they couldn’t find provision for Jessie, was that down to cost at all, or lack of there being any available facilities out there?

AD: I think for both Fiona and myself, we weren’t involved in that decision, wouldn’t be within our remit to give a yes or no answer.

Equally where have been involved in cases where placements being identified, is always a struggle to find the right support for an individual’s needs and placement. For Jessie’s case in particular, I think we couldn’t give a definite answer I’m afraid.

Coroner: From your experience would you like to see more facilities available nationally to be able to provide assistance?

AD: I think on a national picture that is the area, the move and drive, to be able to have more support and more individualised care and personalised opportunities for people in community settings.

The coroner said that she’d now pass them over to the other interested persons to ask questions. First up, Brighton and Hove City Council.

Counsel: I ask questions on behalf of Brighton and Hove City Council, obviously I’m not going to ask very much. Just to ask first of all, it’s right that you took over the work of the care commissioning group for the area in about July last year is that right?

AD: Yes, that’s correct

Counsel: Many staff transferred, you’ve got a new constitution, from about July last year?

AD: Yes, some staff were moved, the ICB came into existence in July 2022

Counsel: That’s my starting comment because sadly the ICB isn’t actually created until after Jessie’s sad death, OK?

Dr Dissanayake Nods

Counsel: Because you took over the functions of the CCG, I’ll ask very few questions, divided into two. First is about the provision for young people with neurologically divergent issues, including autistic spectrum disorder, ADHD, that kind of thing, alright. In say the period around the year 2000, had the CCG created anything by way of physical estate for which would involve the treatment or work with people who are older children?

AD:I think, sorry Fiona do you have a clear answer you’d like to give?

FS: No

AD: Probably difficult for us to comment back in 2000, I wasn’t working with the organisation at that point, wouldn’t be able to comment on actions at that time.

Counsel: It’s about the estate you inherited, is no unit owned by the CCG, run by the CCG which provides beds for young people with neurodivergent issues. Is that right?

AD: Again wouldn’t be able to give specifics on estate funding, or how that’s originated I’m afraid

Counsel: OK, alright, let’s move to adults. Although the area is adults of working age, is the terminology used, the evidence thus far has been this is obviously an issue particularly arises for young people, often young girls, who are young adults, I’ll ask about that.

From about 2000, 2001, 2002 is there any physical estate, any unit you own or run, which provides you know residential facilities for young people of that age, presenting with that cluster of symptoms, we’re talking about, ASD and neurodiverse presentations?

No immediate response.

AD: Sorry, I think again we wouldn’t be able to comment on the estate situation at that time, the services are funded and commissioned to providers, I would have expected it to be the same at that point, rather than something the CCG or ICB would necessarily own directly, but I couldn’t give any more specifics I’m afraid.

Counsel: The evidence appears to be what the CCG does is it either looks for private providers, possibly NHS providers in other areas who could provide, or even in Sussex, who could provide such beds or it would help fund a bespoke placement?

AD: Go on Fiona

FS: To echo what Amy was saying, we wouldn’t fund services ourselves, we would seek to commission those through providers locally or outside of the area.

Counsel: But it would be on a young person by young person basis, is that right? Is that what you’re saying, you haven’t commissioned a facility, with each young person look to see if can provide a bed?

AD: Because we were asked to respond to questions we were given yesterday, we wanted to make sure we had answers to those, we don’t have detail of what estate planning is for autistic people or people with neurodivergent or learning disability needs in hand, to answer question I think you’re wanting I’m afraid

Counsel: I’ll ask one more question [missed section] the evidence given was treating physicians responsible for medical care plan for Jessie were only aware of one unit, in Northumbria, that might even begin to be relevant to Jessie, was issue whether right fit, question is is there anything in Sussex available?

AD: I think I probably can give little more on that, assume Mitford Unit referring to, very specialist tertiary centre, designed and built specifically for the patients it serves, who are complex individuals, or individuals with very complex needs, autistic individuals. To my understanding that is the only one in the country which is that, that is *the* specialist unit in the country for individuals who need an inpatient setting for such complex needs.

Counsel: Thank you so much, thank you very very much for that.

Then it was over to counsel for East Sussex County Council.

Counsel: Thank you, I ask questions on behalf of East Sussex County Council. You mentioned the Transforming Care Programme, which you said started around 10 years ago to identify more suitable places for autistic people to live, as well as people with learning disability, so more community based. Do you know whether that programme had in mind people with high functioning autism and don’t have a learning disability, or was it people who would otherwise be in residential setting with what is known as comorbidities, so autism plus learning disability and may be non-verbal.

AD: Transforming Care was originally set up for someone with a learning disability, that was the priority for several years, then recognised autistic individuals would benefit from being part of that programme so expanded to include autistic people as well, apologise I don’t have the dates, but several years after the programme started.

Counsel: Are you aware of the availability of placement, by which I might mean a residential setting, and also providers, so care providers who could go into a supported living setting, who specialise in working with young people with high functioning autism? Are you aware of the availability of those placements and providers, both in East Sussex and nationally? What’s the availability like?

AD: I’m sure, even in the news today talking about real challenge around specific placements for individuals and being able to, needing additional funding nationally around that.

I think, I don’t tend to talk about people necessarily whether they’re high functioning or not, tend to look at what their individual needs are and identifying support depend on those needs, can be very [missed] multiple mental health and physical needs need taken into account, as well as level of independence and other factors. Wouldn’t be able to define placements or care provision based on that definition as such.

From Sussex picture, if you need specific details what provision is I’m sure colleagues have that, just don’t have it to hand to say this many placements for this many people with specific needs.

Counsel: It’s a matter for the coroner, but I think what Mr Downs and I are driving at, is what local availability are.

Understand what you’re saying about definition, are either of you aware of Jessie’s needs and what needs she was presenting with, I’ll be more specific, if you were aware what Jessie’s needs were, what was availability locally or indeed nationally to meet needs of young person presenting as Jessie was?

AD: Again because neither Fiona or I were involved in Jessie’s case, very difficult to give specific answer I’m afraid.

Counsel: Which might answer my next question, were you aware it was the CCG, now the ICB that had sourced IMC Locums, and identified IMC Locums for East Sussex Council because East Sussex weren’t able to find an alternative provider. Were you aware that was the history?

AD: I’ve seen that organisation referred to in the SI but don’t have further information.

Counsel for East Sussex asked if anyone would have knowledge from when Jessie was living at Viaduct Road and what was sourced by the CCG. Dr Dissanayake said that she would try to find out.

AD: Can certainly go back and see if we can, and give an update to you ma’am if that would be helpful, would have to check with colleagues to see.

Coroner: They have legal representative online, perhaps she can take instruction. The question is was IMC Locums put forward by the then CCG.

Counsel: Yes that’s a much simpler way to ask the question I was asking

Coroner: Ms Ravindram did you hear that?

MR: Yes, were they aware and what situation was sourcing those locums. I can go back and take instruction on that and see if can come back with answer.

No further questions from East Sussex County Council. Over to counsel for Sussex Partnership.

Counsel: I ask questions on behalf of Sussex Partnership NHS Foundation Trust, just very limited questions. You mentioned and provided helpful further detail in relation to one unit, is it Northumbria or Northumberland, I forget?

AD: Pass

Counsel: We’re all clear is just the one, are you able to assist, yes or no really, might well be a no, what is the rationale for nationally having one unit?

AD: I don’t think that’s in my remit to give that answer, sorry.

Counsel: OK, hoping you can assist with the next one though. We heard the detail of your review and plan being finalised, in light of that exercise you’ve undertaken in evaluating needs of patients in Sussex, are you satisfied that one national placement is adequate?

AD: I think the one tertiary, very highly specialist centre, offers a different service to the many other inpatient settings that there will be around the country and in Sussex. So its clarifying there is still that difference, in same way we have tertiary centre for cancer treatment, might be for us in Sussex in London, primary care, then secondary care our acute hospitals, then super specialist centre which is your tertiary centre, to clarify that difference.

Area of focus in neurodevelopmental pathway thematic review has been starting off with particularly pre-assessment, assessment and post assessment support and pathway. Then the next phase will be looking at the wider needs and services for people with a neurodevelopmental condition more widely, as the next phase.

Counsel: Perhaps ask that question from slightly different angle as well, those like Jessie considered to be, not definitely, considered a possibility, that’s what we heard, appreciate you weren’t involved in Jessie’s care of course, given that one national unit was considered a possibility, are you now confident with the review taken place and plans moving forward would be adequacy of service, for somebody who that one placement was considered potentially the only option, if this situation were to present again?

AD: I think a lot of the work done already that Fiona outlined earlier, particularly around supporting individuals so not necessarily reaching point of crisis for admission, big part of Transforming Care and national direction. Having much more support early on in their journeys, more psychologists, better adapted therapies, better access mainstream healthcare, at much earlier stages.

That’s work carried out so far, next stage of the neurodevelopmental review is looking at other services available for autistic people.

Counsel: Thank you, that’s helped clarify.

It was then over to counsel for Jessie’s family.

Counsel: You’ve just outlined in the last answer about work done so far, specifically to do with supporting individuals so not reaching point of crisis in first place. We’ve had the benefit of hearing evidence from another practitioner, named Dr Eaton, she referred to practice in her area of Norfolk, called NHS Navigators, whose specific role is to be in community to prevent crisis. Has the ICB considered their use in Sussex?

AD: Fiona, I know you mentioned something along those lines.

FS: It’s certainly part of our plans and we work with and commission services in voluntary sector, increasingly in last few years, that enable people to be supported by those sorts of navigating services in the community.

Core part of our work, how can we make those services more easily accessible and easier to find and access for local people.

Counsel: You make reference to utilising those in the voluntary sector, are you satisfied those you are using have suitable sufficient training and expertise to carry out role effectively, trying to avoid a crisis?

AD said that she had not heard the question. Counsel for the family repeated, in more detail.

AD: Yeh am I right in thinking although we do work really closely with colleagues, we also commission, so minimum level of training, Oliver McGowan Training is statutory, for anyone employed by health and social care, nationally directed minimum standard.

Then any services have their own quality standards and monitoring as being commissioned service.

Counsel: We asked Dr Eaton what Jessie required, and she said support workers well trained, adequately rewarded, not just money.. [missed quote but it’s in my report of Dr Eaton’s evidence here] valued career path, someone work with a young person and family. Are you satisfied that’s being provided?

AD: That absolutely sums up what we’re trying to do for our population, Fiona don’t know if want add anything?

FS: Absolutely agree Amy, as mentioned earlier, training is key part of our plans, recognise is opportunity, and more than that is really really important as well to train a wider group of practitioners than are currently trained in this area, supporting people with neurodevelopmental needs.

Counsel: Also picked up by Dr Eaton is consistency of individuals providing care to be able to build relationships, any steps to address that?

FS: In all our work we’d seek to support our workforce, as colleagues know are workforce challenges locally and nationally, in all work doing with NHS providers and across our local system we’re seeking to support and grow our local workforce, in any way we can and by way we work together to increase the consistency in staff available.

Counsel: Have you identified the causes of those workforce challenges?

AD: Is ongoing programme, affects all areas of healthcare, across the board in primary, secondary, tertiary and social care. Better understanding of how to recruit and retain staff is ongoing [fuller answer – missed].

Counsel: My understanding of the programme of work so far, developing programme, focusing a lot on assessment and getting diagnoses, but hasn’t been on providing tertiary care to those who already have a diagnosis? Is that a fair summary?

FS: That is a fair summary. Next step is how we support people with neurodevelopmental needs more broadly, is next steps of the programme.

AD: Also to add there is Specialist Commissioning from NHS England directly, that supports those specialist centres, that the specialised commissioning route that the ICB wouldn’t be involved with.

Counsel for Jessie’s family said that Dr Eaton reference to knowledge of care given to another individual, bespoke package for individual named Bethany. She asked whether either of them were aware of that bespoke package, neither were.

She then asked a question I missed, apologies.

AD: That’s ongoing. Our business as usual I guess to support people, not necessarily under Section 117, but more widely different placements are needed, working with the local authority to do that as part of ongoing work.

Counsel: Just going back to Jessie’s specific case, think you said at the moment don’t have information about whether IMC Locums was suggested by the CCG. What level of involvement, if any, would the ICB have had, if any, in accommodation placement that individuals are put in?

AD: Again going back to earlier answers, under Section 117 placements they are jointly funded placement but led by local authority, more detail than that we haven’t got, isn’t part of our usual remit.

Counsel: We have heard evidence in the course of this inquest, because of Jessie’s mobility issues she was taken out of her property in a crane… is there any way you can feed into decisions and funding around accommodation?

AD: Certainly the use of hoists is something we would see for individuals generally, and obviously making sure that is able to be accommodated in environment and staff have suitable training.

Counsel: You’re not saying the ICB would have any role in liaising about changing accommodation, is that beyond your role?

AD: In certain situations would be liaison, but again veering out of mine and Fiona’s remit, don’t want in any way to go further and not be able to give an accurate answer.

Counsel: One last question on funding issues, we understand IMC Locums funded 50/50 between ICB and East Sussex, is there provision to seek further funds from the ICB, for instance provide specialist training or input other agencies would that have been a possibility?

AD: Quite difficult to comment whether occurred or requested at that time, to our knowledge wasn’t any request or discussion made, but not being involved at that time not possible give more specific answers.

Counsel for Jessie’s family then asked a question about whether there would be ongoing discussion about inclusive plans if a package needs support from a third party.

AD: My understanding is it could be, but again outside mine and Fiona’s remit.

Counsel: As part of the programme you’re currently undertaking, are you receiving any feedback from the Autistic Society in respect of their views whether the Transforming Care approach is actually working? [I’m assuming this is a reference to this].

AD: Do you mean NAS and whether specifically involved in the neurodevelopmental work, we have been working with multiple stakeholders, don’t know if NAS is one of them, would expect them to be, Fiona don’t know if you’ve got that list?

FS: We have worked with wide variety of stakeholders, would need to consult my records to see if they were involved, if NAS are one of them, lot of stakeholders involved. Can respond once had opportunity to look at my records.

Counsel: You’ve spoken about your efforts to create more community based support, what is your view on current progress and high levels of people in mental health acute wards with diagnosis of autism. Firstly, are you aware of the heigh numbers and secondly what’s your view on that?

AD: We are aware of high numbers, particularly autistic people between 18 and 25 nationally continue to increase in inpatient numbers, we are aware that is a significant concern, so, hence the importance of the work to try to prevent admission and support individuals from an earlier stage so not reaching that point of crisis, would probably be why so important we can put in all the services and offer as much we can at every point within that individual’s journey.

Counsel: Do you think the numbers are reflecting progress on this issue from your part?

AD: I think it’s probably difficult for us to give a comment on that, Fiona, unless you have any other perspective?

FS: I’d agree, difficult to comment, thing to say about current neurodevelopmental work, is we’re working with people and finalising those plans currently, so timing makes it difficult to comment on that.

No further questions from Jessie’s family. Then counsel for Brighton and Hove asked the coroner, who he told he was acting to assist the court, rather than for his interested person, but he wished to adduce evidence about the mandatory nature of the Oliver McGowan training. The coroner permitted that.

Counsel for Brighton and Hove: Apologies for being out of turn, you refer to the Oliver McGowan Mandatory Training, if you take a step back the ICB are registered with the CQC is that right?

Dr Dissanayake nods

Counsel: Section 181 of the Health and Care Act of 2022, introduced a requirement and regulation 18 for the CQC, around this question of training, statutory training… came into force 1 July 2022, that service providers registered with the CQC must ensure staff receive training on autism and learning disability, relevant to their role, parliament produced that requirement on everybody?

AD: Yes

Counsel: Oliver McGowan story is rather beautiful one, came from an inquest, particular training, that is mandated at moment

AD: It doesn’t have to be that training, that’s nationally recommended one, there are others.

Counsel: It is currently in fact being evaluated?

AD: Yes

Counsel: That’s all because it’s so important that everyone develops the best training possible, you’re nodding for the record.

Nothing further from Mr Downs. It was over to the jury for their questions.

Juror: You said services commissioned by the ICB should have performance monitoring, can you explain what that looks liked and who carries that out?

AD: Will vary depending on what that situation is… often services will be given KPIs, key performance indicators, targets expected to look at, one of the ways in which a service is monitored.

For me another really important way is understanding patient experience, what people feedback on, measures around that as well, depending on what that service is, seeing if they’re doing what they’re meant to be doing?

Juror: [can’t hear]

AD: It would depend on who has commissioned that service, or who’s the main commissioner of that service

Juror: I know you were not involved at that time, with IMC Locums, do you know who was responsible for performance monitoring?

AD: No

Coroner: Think that question needs to be asked of who facilitated that in the first place, and that answer will come back

No further jury questions.

The jury were released for a short lunch break at 13:22. This afternoon the court heard evidence from the coroner’s expert, Dr Beber. I am going to write that evidence up tomorrow, as the jury are not in court tomorrow and I’m going to go wild and take the evening off.

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