Fern Foster Inquest – Dr Tina Malhotra, Oxford Health PFD Evidence

The first witness on Day 11 of Fern Foster’s inquest was Dr Tina Malhotra, who is a Consultant Psychiatrist and Clinical Director at Oxford Health NHS Foundation Trust.

She gave an affirmation and the coroner welcomed her, saying that he was hearing from her in relation to learning, actions and implementation following Fern’s sad death. He asked Dr Malhotra to start by introducing her role.

TM: I’m a Consultant Psychiatrist, today I’m here in my capacity as Clinical Director for Buckinghamshire Mental Health Directorate, part of Oxford Health.

I started working as Clinical Director in June 2022. This incident and the Root Cause Analysis report happened prior to myself joining, as Clinical Director however implementation of the actions is a continual process. Whenever any serious incident occurs, I along with my colleagues are responsible for overseeing what is the outcome of those investigations, what actions are identified and how we make sure all services in Buckinghamshire Mental Health Directorate, and across the organisation are implemented.

The Coroner said that he would look to Ms Graham, Oxford Health’s barrister, to outline the areas she wished to address the court on.

AG: Dr Malhotra, if you could start by describing as things are now, the autism services that are provided by the Oxford Health Trust?

TM: The autism service we’ve had for a few years, was primarily autism diagnostic service, part time consultant psychiatrist and clinical psychologist, and other multidisciplinary staff members. That is very much to do with any new referrals for adults with suspected autism that might come to that service.

However in the last two years we’ve developed that service a bit more, including some support that goes into other services within the directorate, for example as outlined in the report, we developed Buckinghamshire Autism Reasonable Adjustment Service [BARA], which compromises of mental health liaison clinicians who can be consulted by other services, to advise about what reasonable adjustments might be needed by autistic people having care from other mental health services, for example the community mental health teams.

This service is in place for the last 2 years and gradually developing a bit more as we go along.

… has been national guidance in last year, 1.5 years, from various areas, NHS England have published guidance, the Royal College of Psychiatrists have public guidance.

The Integrated Care Board (ICB) have developed an autism strategy and now the Trust is trying to implement all these guidance coming along in what we call the Trust Neurodivergence Strategy Group. Set up 2023, in initial stages, idea is to develop this group to oversee how overall the provision of care for autistic people is, at present in the organisation.

AG: In terms of the real life examples of that, practical examples of that, can you give some?

TM: Absolutely, if I give an example of the overarching Strategy Group, aims of the Strategy Group is first of all to scope out what is happening within the organisation, then identify the gaps in the services, to coproduce any new service or provision that may be there, along with Experts by Experience, and make sure it aligns with the overall ICB Strategy.

To give some other practical examples, started even before the Strategy Group, with Buckinghamshire Reasonable Adjustments Service, for example the BARA Team as we call them, have been going into the wards, skilling up staff, in inpatient and community services.

If as clinic I have someone with autism, and co-occurring mental health conditions, I can call on the BARA and ask what reasonable adjustments can they make for my patient. They also set up some training groups which have been very well received by the ward, the community and inpatient mental health staff.

AG: In terms of practical examples of reasonable adjustments, have you got examples of those?

TM: We also recognise the needs of autistic people, we haven’t been meeting for example the sensory needs that may be there.

In last two months we’ve changed the waiting room in the main centre in Aylesbury, from direct feedback from people coming for diagnostic assessments with Buckinghamshire Autism Diagnostic Service, they needed a quiet place, so separated it out. Structural change to ensure sensory needs are met.

This is a broader thing but as personalised level as well we can, if patient is coming for an outpatient appointment, or as an inpatient, we make sure whatever additional sensory needs or reasonable adjustments need to be made, are provided.

AG: Thank you, we’ll come onto training shortly, in terms of more what happens operationally in teams, with clinicians for example, how is autism embedded within practice?

TM: It is very clear now, based on the national guidance that is coming through and general sense of them increased within the service, that neurodivergence is so common, especially in the mental health population, that is under our care, that autism is basically everyone’s business, so all services have to be autism informed. That’s vision the Strategy Group has, we’re not there yet, aim is every clinician is aware of what autism informed care means so can make adjustments required to patients presenting with mental health needs.

AG: You touched on Autism Champions, can you touch on that please?

TM: Within each team … within the directorate, we have identified Autism Champions. These are clinicians working within the team, who if you like, they’re the flag bearers for the team, to know more what is happening in autism space, in the community, as well was any new initiatives in the Trust. Those are the ones embedded within the team, to bring forward any ideas or provide guidance to other clinicians, who may want some more knowledge to help their patients.

AG: Thank you, in terms of training, training staff, clinicians and non-clinicians alike, in being autism informed, can you tell us some more about that please.

TM: Since the Reasonable Adjustments service has been set up, they are providing some training to staff, and our Trust was an early adopter of the Oliver McGowan Training, an essential training for all clinicians and non-clinicians, as of 1 April now become mandatory training, which means all clinical staff need to do Oliver McGowan Training.

Myself having done the training, it is a good eye opener as the first bit of training for all staff to be aware of. Definitely starts opening eyes for staff to look out for anyone who has a diagnosis of autism and what in simple ways can be done for the patient. It’s a good start. Other than that a lot of staff members are, as availability of training nationally, for example know some of consultant’s we work with, and myself have been accessing Royal College of Psychiatrist Training, the foundation course for adults with autism, and the enhanced course.

Idea again to embed autism informed thinking amongst all clinicians. Slowly, these sorts of training is improving.

AG: How would you describe difference between where service was in autism awareness services in 2020, compared to where you are now?

TM: I think we’ve come a long way, we’re not there yet, there’s a lot still needs to be done. There were still gaps across the services, for example our initial focus was on inpatient services because we want least restrictive practice with autistic people to not have inpatient admissions, because we do know it’s very difficult for them.

… next step really is to make sure all the Community Mental Health Teams, which is already staffed, we need to expand that, as well as other recommendations mentioned in the report, regards to the development and the actions from the strategy that emerge across the organisations.

AG: Thank you, at the outset of evidence you mentioned as Clinical Director part of your role ensures implementation for recommendations etc… are you involved in ensuring recommendations of the Root Cause Analysis are taken forward? Can you tell us some more about that please.

TM: That’s right

AG: Would you like to go to it, would that be helpful?

TM: I have made some notes, can try and answer.

C: It’s probably helpful to talk through those, were dozen or more recommendations … some short term … some time past since Fern originally died and the Root Cause Analysis, would be helpful to understand.

AG:1532 of the Oxford Health bundle

C: If you could give me the page of the RCA as well?

AG: Page 42 of the RCA

TM: Recommendation 1 to work with Commissioners on how to fill gaps in autism provision

As part of that the Reasonable Adjustments service was additionally commissioned, two parts to it, one is provision for the autism diagnostic service, then the next part is to have autism informed care across the services

As far as the diagnostic service is concerned, there hasn’t been additional commissioning from the ICB onto increased provision for that. It’s a very small service for adults for diagnostic pathway … however … work to ensure as limited a waiting list as possible… also provide consultation to patients, to meet mental health team staff who already have patients who have comorbid autism, to provide that advice.

Then the second recommendation to introduce the audit, use the Green Light Toolkit as a baseline for service improvement.

This audit was done. What we observed was in some areas there were very few gaps, especially as I said we started implementation in Inpatient Services, but we’re rolling out a fresher audit again to see where Community Mental Health Services are. This is work in progress, second stage of audit.

Recommendation 3 to train clinicians on Autism Spectrum Disorder and reasonable adjustments, can be delivered by the FIND team across the Trust

It says deliver by FIND but moved on to BARA Service now. Is more in-house now, rather than the previous team. Sorry, I have forgotten what the acronym stands for.

Recommendation 4 to provide liaison and expertise about Autism Spectrum Disorder in Buckinghamshire.

Recommendation 4 is being delivered by BARA and the autism service.

Recommendation 5 accurate recording in Care Notes [fuller recommendation, missed, sorry]

At the time we’d improved the diagnostic recording in Care Notes, unfortunately we had an outage of care records which has meant care notes now functioning … now moved onto new system called Rio… is almost like we have to start from scratch with a new patient recording system but this is definitely one of the primary areas to look at because this is something we need to report nationally as well…

Recommendation 6 create awareness of how Care Notes flag around communication is used.

This is again similar to the previous one, have to readapt that for Rio. This is also work in progress, but definitely the alert system still exists on Rio and is where communication needs can be identified.

Recommendation 7 review diagnosis in the PIRLS [Psychiatric In-Reach Liaison Service] process, that’s the liaison psychiatry service in Stoke Mandeville, to be reviewed by Head of Adult Service and the Head of Nursing.

This came about because of the wrong diagnosis of Emotionally Unstable Personality Disorder was documented in the assessment done by [missed]. This was looked at, that any diagnosis that is recorded is always discussed with the Consultant Psychiatrist.

A formulation can be provided by the nursing staff or non-medical staff, but the diagnostic element lies in with the medical professionals in the team.

In [missed] team it does work effectively, there are gaps across sometimes, when the diagnosis changes. This is linked with the previous action where the accuracy of diagnosis should be there, the primary and secondary diagnosis on Rio. That is still a work in progress.

Recommendation 8 to create awareness of advocacy through induction of locum staff and in team meetings, item in XXX [missed]

As I have mentioned in my report advocacy service are an independent service, they’re not delivered by Oxford Health, however as mentioned here, any new staff members, this is in induction it is mentioned. However service change and any change in services usually there is outside service, advocacy service if they change, that information is disseminated through operational and governance meetings, where all team managers. Are there who then cascade it to staff members in their teams.

AG: And the leaflets you’ve appended to your statement, they have useful contacts and resources … Reasonable Adjustments leaflet

The coroner gave the bundle reference and someone (either the Coroner of Ms Graham, apologies I’m not sure which, said they were Neurodivergence Project Plan and the Autism Reasonable Adjustments).

TM: Absolutely, those are our leaflets for the BARA Team

AG: In respect of the advocacy services point, you obviously mention that awareness of reference to advocacy services, is that also the thought behind the reference to the various autistic spectrum services?

We are primarily a secondary care mental health provider, we work in partnership with all the other organisations in the community. Whether someone has a neurodivergent diagnosis or not, the idea is to work with the services that are available in the community, personalised to the individual, and to normalise it as much as possible, rather than everything in secondary mental health provider. We have to work in partnership with all the other services, as part of this, they have additional initiatives that are happening, part of our annual plan for this year, is linking in more actively with voluntary care sector organisations to address some of the health inequalities.

It’s not mentioned in any of the reports but we are investing more in these sorts of voluntary care sector partnerships, that already exist and engaging that a bit more.

AG: Then finally can I just ask you about working with partner agencies and how mental health team are able to do that, and what changes have been made?

I’ll give you some examples which have come about in the last year or two years, generally as part of improvement of community mental health services, under the community mental health framework, again a national initiative we have developed services within the primary care space. Where we actively link in with other organisations, for example is voluntary care organisation called XXX who provide interventions for some patients with high intensity needs. We’ve developed something called a Service User Network in primary care space. Not saying all applicable to Fern but demonstrating how working with other partner agencies. Other investment with Sports in Mind, where know some patients might benefit from that intervention… examples of working with voluntary sector organisations.

The other services as well, whether autism support groups, again, at this point in time we rely quite a lot on the autism diagnostic services and BARA Services, because they are better informed about what is happening in the community space, for us to link up all the other clinicians with services.

AG: Ms Hinton will give evidence … the interaction between social care and mental health, can you elaborate a bit more of how that works now as opposed to 2020

TM: There has been significant change actually in the last 2 years as to how [they work together] … has been redrafting and agreement of Section 75 agreement, wherein the social workers who are embedded within the community mental health teams, they are not working as generic care coordinators. I’ll give you an example, if one of my patients in the community mental health team needs social care input, I would ask the social worker within the team to provide that specific social care input, rather than that be the responsibility of a care-coordinator whose profession could be nurse, occupational therapist etc. So the social workers are now doing the social work job, rather than all the additional multidisciplinary jobs they were doing. This has meant is more clarity on the social care input that is happening. The social worker is still employed by the Council but are embedded within teams to provide that statutory social care responsibility.

AG: The interplay with Children’s Services, how does that play out?

TM: The interplay with Children’s Services is primarily through multiagency working, through professional’s meetings, Children’s Social Work attending our meetings and have joint discussions and vice versa. That is primarily happening through the multiagency.

As far as Children’s Social Care is concerned, the same sort of agreement as Adult Social Care, that does not exist because Children’s Social Care sits with the council, rather than those social workers embedded in the mental health teams.

AG: The Working Together mentioned in this case, does that have any interaction, does that effect the interaction between health and Children’s Services?

TM: Absolutely, as part of the system partnership we work in, the Working Together document applies to mental health services, as to the other partners, whether Children’s Social Care or other system partners. The aim absolutely is to work alongside to make sure the key workers, new terminology for care coordinators, are involved in group meetings, in any of the decisions made about the patient that the keyworkers are looking after.

AG: Just two more discrete points in respect of the autism specialist service and the awareness relates to Experts by Experience. Can you just tell us what that means and how that, there’s an Autism Strategy Group, can you tell us a bit about that please?

TM: As part of that Autism Strategy Group we have people who have lived experience of autism and maybe other mental health comorbidities who are part of this Strategy Group. The idea would be to have that lived experience information at that higher level, as well as to assist us to coproduce any of the new service or changes that need to occur to fulfil the gaps that exist across the services.

AG: Not sure if you touched on it, the Integrated Care Board, my last questions, around how that works, emphasis being on integration between the agencies?

TM: Yes, overall as we know the the Integrated Care Boards have been set up who are now responsible for commissioning and overseeing all the care that is provided to the population. As part of that the Integrated Care System, the councils, the voluntary sector organisations, they’re all system partners within that.

Because all of this has happened in the last 2 years or so, it is still very much early stages of that Partnership Board, but certainly we do have now the Integrated Care Partnership Boards, board wide, Buckinghamshire, Oxfordshire, Berkshire. All the placed based boards they report to that Partnership Board. Within the placed based boards I chair the Buckinghamshire Placed Based Board along with one of the GP leads… has all the partners come along, including Public Health, Adult and Children’s Social Care, as well as the acute sector, the GP lead, all of that. The idea is any developments that are happening, we are jointly overseeing all of that. In fact in the next Place Based Board the Buckinghamshire Autism Strategy is going to be discussed so all partners are informed, it is everybody’s responsibility and not just a mental health responsibility.

AG: Finally, we know Fern had a care co-ordinator, you said that role doesn’t exist any more, is now key worker. Can you explain the differences?

TM: If you like there is not a huge deal of difference, but the Care Programme Approach, that mental health services were directed to follow, that has been abolished. In that used to be two levels of care, one was Enhanced CPA where any patient used to have a Care Co-ordinator, then Standard CPA where no care coordinator, less enhanced, lets say if required only medical input, under consultant or other medic and not have a Care Co-ordinator.

What changed now is after abolishing of the CPA approach we’re following Core ?? Standards?? approach… every patient has to have a key worker.. if more psychological needs could be a psychologist, if more medical needs could be psychiatrist, if more nursing needs could be nurse… the professional you’re expert we’re personalising to the patient who needs that level of support.

Sometimes for example we do know a patient needs more .. more day to day support, then a support worker, or ?? worker could be the key worker for that patient. That doesn’t mean is just one individual who is looking after that patient, is overall within the team as well. The key worker might change from social worker, if occupational therapy needs increase that key worker might become the OT, however with social worker still remains we can get the social worker to input into whatever the key worker is doing.

AG: Thank you, as I understand it the Social Work Team sit there to feed into the clinical team, and the keyworker prescribed depends on the clinical needs of the patient, can be anyone …

TM: Exactly

AG: Thank you.

It was then over to Sam Jacobs who asks questions on behalf of Fern’s family. He introduces himself.

SJ: Can I begin by acknowledging the frankness of the RCA Report and the listening to the views of the family, which of course is appreciated.

Does that reflect a broader culture the Trust is seeking to instil about its learning?

TM: Absolutely, things have actually moved on since the Root Cause Analysis, now we have been early adopters of what is called the PSIRF, the Patient Safety Incident Response Framework, that is how any incidents are investigated, the principles being this is to have open investigation, to fulfil the Duty of Candour, rather than imparting blame on anything, to have it more as a learning culture.

Overall the way I must say, I have seen a change, in how we are investigating, creating reports, the Patient Safety Team, they actually work quite independently of the clinicians. Rather than, yes they’re part of the organisation, but it’s a separate team that investigates any incidents. It is my responsibility, along with the Associate Director of Nursing, for us to create actions and ensure that implementation happens. Then we have to present to the Executive Board, where the Chief Medical Officer and Chief Nusing Officer scrutinise that and there’s a member of the ICB there for that… very open culture for all those investigations.

SJ: OK, thank you. I’m going to ask about training. You’ve explained the Oliver McGowan Level1 e-learning training is delivered. Do I understand correctly there is two levels of Oliver McGowan training?

TM: That’s right

SJ: And the training delivered to all staff is Level 1. Can you help with the difference between Levels 1 and 2 please?

TM: Level 1 is e-learning, quite long training, having done that it takes you through several modules and steps. Level 2 training, my understanding is, I haven’t done it myself, is its more interactive and face to face. I can double check that.

Initially it a Learning Disability Team, which we only deliver a Learning Disability Service to Oxfordshire, Buckinghamshire is delivered by another Trust, Hertfordshire. Initially the Learning Disability Service were doing Level 1 and Level 2 training, idea is this is going to be expanded to all the other areas as well.

SJ: Sorry, did you say the Learning Disability Team do Level 1 and 2?

TM: It wasn’t mandatory, we adopted it to deliver it to our staff. Initially the Learning Disability Team, a lot of patients they have have autism, was not mandatory, was essential training. They took initiative to provide Level 2 training across. Now we have to rethink how it’s provided to all.

SJ: The point I’m interested in understanding on behalf of the family, you’ve described the Oliver McGowan Level 1 being regarded as vital training, in fact mandatory from earlier this month for all staff. I think you described it earlier in your evidence as a starting point, clearly not everyone in the trust can be leading experts in autism. Want to understand the extent to which there are groups of staff in the Trust that do have a more developed training? I noted for example you do describe in your statement there is additional learning available, but its optional. Can you give us the extent there are groups of staff with training to a more developed level?

TM: Yes, within the organisation, even pre Oliver McGowan training, when it was being introduced, in tandem with the Autism Diagnostic Service and the Reasonable Adjustments Service, we have developed some modules of training available to all staff. If I wish, I can do that training, however the Autism Champions within the service, within each team we’ve introduced, they’d be expected to do more training with the Reasonable Adjustments Services, so they’re more aware.

SJ: Sorry to interrupt, does the Trust know for example how many staff have done the Level 2 training, or the training webinars you describe in your statement?

TM: That is part of the scoping exercise within the Strategy Group, set up only in December 2023, how many staff have accessed that training, which teams, so more gaps exist. I do not have the data with me now but clearly … part of the strategy is also to ensure increase the uptake of this training

SJ: Would it be fair to say then Oliver McGowan Level 1 for all staff is a fantastic start and development, but more work to be done for the Trust to develop robustly, training for certain staff in the Trust?

TM: As I said these two initiatives are happening in parallel, so difficult to say. As a clinician, as a learner, I’m forever training. I just came back from an ADHD training yesterday and doing enhanced training with Royal College, is now lots of training available, difficult to say. We have said this is basic minimum Oliver McGowan training, for some services that is enough, where see more presentation of autism… [missed]

And also to tailor the training according to the services, is never one size fits all.

SJ: Ok. A scenario that we’ve heard about in the circumstances of Fern’s death are Care Co-ordinators and Adult Mental Health Services working with Fern, who in a sense did have a complex presentation, and certainly one Care Co-ordinator Eve Fletcher, felt she needed to be able to reach out for some autism expertise and unfortunately it wasn’t available, which is fairly recognised in the Root Cause Analysis. A Care Co-ordinator, or now Keyworker, in the same position, where would they be able to reach to, what pathway would they be able to use?

TM: First of all within their MDT Team would be an Autism Champion, who would be their colleague. The BARA Service also is very much in demand, are only 2 clinicians, but we have seen lots of services reach out to them, so the awareness of the BARA Team is quite out there. There are posters across all sites that we have, as well as information delivered and BARA Team also come now and again, invited into Clinical Team Meetings to do bit of training, but of new information, so that is where the Keyworker would go to.

SJ: OK, and BARA, the Reasonable Adjustments Team, would that generally be a one off consultation providing some advice?

TM: It could be one off or more than one off, but they do not work directly with the patient, they provide consultation to the staff and staff make any adjustments. As a clinician I can go as many times with my queries to them, but is my responsibility and my team’s responsibility to deliver that.

Sam then asked Dr Malhotra to remind him how Autism Champions were selected, and what expertise they might have.

TM: It’s not a competitive sort of, every team for example has some Drug and Alcohol Champion who might work in liaison with Drug and Alcohol Service, go to their training and provide advice back. Likewise Autism Champion, group would have forum to get together and learn from each other and seek advice from the autism service. That is the idea of champions, they have more awareness.

SJ: Autism Champions, not knocking them at all, but they’re more about raising awareness in teams than providing direct input and advice to a particular case?

TM: I suppose is both, if I am an Autism Champion and participating in forums, I’d be more aware of what community resource is there. If case discussed in MDT I would be more able to advise sounds like might benefit from x y z, it’s both.

SJ: I think my clients may be concerned that the next time an Eve Fletcher, or whoever the key worker or care coordinator is, needs some real expert support for an autistic person who is enduring something really difficult, like care proceedings, they might have a one off consultation with an over-stretched BARA Team, perhaps have an Autism Champion they can talk to, but it’s really not all that different to the position Eve found herself in. There perhaps isn’t really an expert service that can provide not just one off assessment but an ongoing robust service when needed.

TM: If I may, the BARA Service did not exist back then, Autism Champions did not exist back then, so there is a difference, but I agree there needs to be more.

Autism is everyone’s business, we need to be providing autism informed care across the services. In secondary care service 1 in 3 or 1 in 4 patients might have autism as well. As our awareness of training is increasing, we’re identifying more of that, some undiagnosed autism with comorbid traits, then reaching out to consult to seek more advice, this is a work in progress. Part of that is overall Trust-wide Autism Strategy because I would hope the vision would be, yes highly complex patients we need an Autism Service, but as day to day in Community Mental Health Team, we should be well equipped ourself to provide that Reasonable Adjustments and care.

SJ: Yes, you’ve drawn a distinction there between general awareness and having autism informed service generally, and slightly different more intensive support might be required in complex scenario.

Do I understand correctly perhaps the Trust acknowledges its perhaps made more progress in having generally informed services, rather than Autism Services who can meet the needs of a complex patient who needs support?

TM: Community Mental Health Teams deal with complex issues. What Autism Service provides is diagnosis of autism and some post diagnostic support… is Community Mental Health Teams that are dealing with autistic patients, not the diagnosis service.

The issue we face is some of these areas have become so specialised, it almost requires lots and lots of resource, which our Autism Diagnostic Service is not adequate

SJ: It has a two year waiting list?

TM: Yes, it has a two year waiting list, is not adequately commissioned even for that. It’s not that commissioners are not aware, they’re very aware, and this is a national scenario… both with ADHD and autism, needs rethink, what is right model to meet care needs, I don’t have the answer for that.

SJ: OK, I’ll move onto a different issue which is Adult Mental Health Services and Children’s Services working together in a coordinated way. You’ve described Keyworkers, very similar to Care Co-ordinator… all of that was in place, albeit under a slightly different name when services were interacting with Fern.

Yet we’ve also heard about difficulties in this case, I’m sure you’ve read about in the Root Cause Analysis, we’ve heard Dr Elkin, the Perinantal Psychiatrist, talking about her difficulty in engaging Children’s Services. We’ve heard Mr Nash talking about how partnership working with CAMHS has improved, but perhaps more to do with Adult Mental Health Services in particular.

Are you concerned there’s still a problem there, or perhaps a real need for services to work together to ensure coordination is more robust and effective?

TM: Is no doubt as provision of mental health care can’t be done in isolation, it has to be done in partnership. Our patients have all sorts of needs, especially social care needs. Good partnership working is key to that. Yes, some of those things can be improved.

As I mentioned earlier with Adult Social Care things are so much better compared to, are different sorts of issues, but it is much better now. The model for Children’s Social Care is different, to say which means that in a way the Mental Health Services don’t really know what is happening at that end, so there is no direct contact.

It is like an external agency that you’re working in, then as working in teams is difficult when the cultures of two service organisations are different, and you’re not working day to day with those colleagues, it is a challenge but I’m not saying we should not meet that challenge. We sometimes work very effectively with Drug and Alcohol Services for example, have joint protocol developed with them. Are examples, it obviously requires collaboration on both ends.

SJ: Yes, would the shorter answer be that there is a need for some determined joint working to be done with Adult Mental Health Services and Children’s Services, in a positive and collaborative way, about how coordination can be improved?

TM: Yes. The short answer is more needs to be done. However, I also want to say is lots of times we do do very good collaborative work. Of course it gets highlighted when this fails, but there are good examples.

SJ: There’s good coordination, yes. Next thing want to ask about is commissioning independent advocacy services. You’ve described them as an independent service but has the Trust ensured itself there is sufficient advocacy service available, not just generally but service appropriate for a person with autism. For your context, part background is in this case the Care Co-ordinator making various referrals, and seeking advocates, but the answer was none of them were fruitful. Help us with that.

TM: The advocacy services are not delivered by Oxford Health, so we have to make a referral for advocates. It is dependent on the patient either wants it, or the Keyworker recognises a need, maybe patient lacks capacity, or when patient is an inpatient under the Mental Health Act, that is dramatic things leads to an IMHA.

These are external, have to make a referral, probably there is not enough of that, sometimes there is a delay in that. Whether any specialist autism advocacy is available, personally I am not aware within POwHER how many autism advocates are there, or what is the specialisms out there. I would assume if I’m making a referral for my patient they might match accordingly, but I’m probably not the right person to answer.

SJ: Does the Trust generally need to take an interest and do some work as to whether enough service exits? On the one hand your statement says you’re recognising the role of advocacy, under Care Act onerous responsibility in recognising advocacy, but rather pointless if the response to a referral is there’s no one available.

TM: I absolutely see that, as a mental health provider we have to be advocates for improvement of services for our patients, its absolutely key. We have I think I mentioned in the report, we recently employed a Mental Capacity Act Lead, which may not strictly apply here, but that is key thing as well, patients who lack capacity, it is very important that they have an advocate as part of the MCA Lead is also one of remits to explore how that can be expanded. They tool on the role only last year, is something to look at.

SJ: Thank you, two topics left. I think we understand correctly that the NHS Long Term Strategy addresses a need to have key workers available for children and young people with learning disabilities and/or autism who may be at risk to inpatient treatment. Do we understand that correctly?

TM: Sorry, is it the Long Term Plan you’re talking about?

SJ: Are you familiar with the idea or principle set out in that Long Term Plan that there are keyworkers for children and young people, young adults, to have keyworkers where they may be at risk of inpatient admission?

TM: Yes, and that is the standard practice. If any patient who, as I said, all patients have to have Keyworker, so it’s not whether someone with autism or learning difficulties, they would have a Keyworker personalised to their needs, the profession of the key worker

SJ: OK. Final topic is this, in a sense relates more directly to Fern’s experience, I obviously want your answer to focus on the general issues. Fern, as I think you understand, at times was given a diagnosis of Emotionally Unstable Personality Disorder, at times she wasn’t. It is something she struggled with and it distressed her.

Can you share any reflections, if you have them, about females with autism being misdiagnosed, or over diagnosed, with EUPD?

TM: I don’t have the statistics of what is the misdiagnosis rate.

Overall understanding of autism is improving. You must have seen nationally that the rates of autism diagnosis has increased. There are questions as to why that might be, because the field of autism has broadened as well. Over the years, compared to when I was training, my thesis was on autism [can’t hear] at that time the definition was autism, 20 years back, was very restricted, the three criteria we used to follow, over time the understanding of autism has improved. Rather than seeing it as that strict criteria, the approach also has been changing over time.

So my learning has changed, my colleagues learning has changed, there’s more needs to be done. Often the general adult psychiatrists, they did not have much, very minimal training, perhaps child posting for 6 months or learning disability posting for 6 months. They were taught only that very restricted presentation of autism, in boys, children who presented with those classical things… over the last 15 years or so adult psychiatry, they lag behind, but with more awareness, more advocacy, more training available, as I mentioned the Royal College training available, started by Consultant Psychiatrists, we are able to recognise autism in the population we see in our clinics.

Some of the presentations of Emotionally Unstable Personality Disorder and autism overlap. I’m not surprised why that might be misdiagnosed, particularly in females, where good masking happens, there is recognition of that. I have already made changes to my practice, doing more autism screening questionnaires in patients with psychosis, where things are not fitting together, we’re almost seeing it with a different lens. I’m sure the misdiagnosis will reduce, but then we also know some conditions can co-exist as well.

SJ: Yes, thank you, that’s helpful. Final question is one of the reasons Fern appears to be distressed by the times she was given the diagnosis of Emotionally Unstable Personality Disorder, is that fear it came with a stigma and the perception of professionals working with her was her presentation was simply a presentation of her personality disorder. There’s little ‘treatment’, quote unquoted, can be provided. Might be a barrier to her accessing services. Do you have any reflections on that? Whether you see where Fern was coming from, and whether in a sense it was justified?

TM: It’s very difficult really to imagine what Fern would have been going through given this new label that is given to any individual like that, especially because personality disorder itself is a very stigmatising diagnosis, which should not be the case, there is treatment available for that, leaving that aside, generally for mental health problems there is stigma out there, more for personality disorder, and if wrong label provided to the patient I absolutely see that is not the right way forward, that is part, as I said, sometimes the overlap of the presentation, the behaviour presentation that can happen, now more recognition of what is autistic meltdown or shutdown, rather than emotional dysregulation is patients with EUPD may present, I would lie if I said that does not happen now, we still need more training of staff members to be aware of these overlaps and to be more careful in how they see this… part of recommendation

SJ: It sounds doctor these problems, as Fern saw them, do exist, but seem to be improving over time?

TM: Absolutely

Sam requested a break given the time, and to give him a chance to take instructions from his client. The coroner noted that Fern’s father had left the room during the evidence, and wished to give Sam the opportunity to check that he was ok. Court adjourned for a 15 minute break and then it was back to Sam Jacobs, for Fern’s family.

SJ: Dr Malhotra, just one matter if I may, you’ve described the Autism Strategy Group and broader approaches… and the way lived experience can play in that. Can you help us understand the extent to which the Trust brings in lived experience by formal and paid roles, or is it more ad-hoc and relying on voluntary input?

TM: We do have an overall strategy for Experts by Experience role, as part of that a lot of our services have Peer Support Workers, who may have lived experience. In the last 2 years we have set up, is quite an exemplary service, it’s called a Service User Network, which is run by peers, in the Personality Disorder Service.

Those are a couple of examples, peer support workers and service ran… coproduction as you see is a ladder, one extreme if anyone interested, come and join us, we recognise that is a more tokenistic way of doing things, that is why the Coproduction Pathway has to be at all levels.

The Peer Support Workers are paid roles, work as part of the MDT, not all the Teams currently have peer support workers roles, but it is slowly, the numbers are increasing. Then at highest level are how services are designed in the first place, that’s where Experts by Experience role in the Strategy Group and all that comes into place

SJ: Sorry, the role in that Strategy Group, that was my question, is that a formal paid role?

TM: I don’t know that, I can find out.

SJ: Maybe that’s something that can be discussed outside the inquest process with the family. Thank you very much.

The coroner then moved to Freddy Powell, counsel for Max Newman, Fern’s partner.

FP: Thank you very much Sir and thank you also Dr Malhotra for the work you’ve done following Fern’s death, and thinking about how things can be improved… couple questions about what current position is, if there was someone like Fern, and what support she’d get on the ground, as it were.

If we start with the diagnostic service, you’ve mentioned that’s been in place for a few years. Was that in place when Fern was alive?

TM: Yes

FP: If someone like Fern had a recognised diagnosis of autism, what support would this service be offering to her, in practice? You said there’s quite a limited amount of it, to a few patients, when capacity of staffing permits. Can you help us understand what support someone like Fern would have got?

TM: This service is purely diagnostic, but Fern already had a diagnosis, this is for adults who are undiagnosed and they’re referred. As part of this service the Reasonable Adjustments Service have developed, they receive supervision from the clinical psychologist and the consultant who run the diagnostic service.

So if was a new patient, adult without diagnosis of autism and suspected autism, those would be patients going to this service. Fern already had the diagnosis, would not have received any input from that service. What she would have received now was Keyworker or Care Co-ordinator would have sought out some help from the Reasonable Adjustments Service.

FP: I want to come onto that in a moment, that’s really helpful to understand how these services work together. Next topic, working through your statement sequentially, Green Light Toolkit, you said was a tool developed in 2004, some time before Fern’s death, you said that was introduced by the Trust in September of 2022, is that correct?

TM: Green Light Toolkit is used in Learning Disability Service, our Learning Disability Service in the Trust in Oxfordshire. I can not comment, I’ve never worked in that service, in terms of general adult psychiatry service are concerned, helps recognition of comorbid autism being present in patients we see.

Idea was identify where are we in regards provision of services to anyone with learning disability or autism, in our general adult psychiatric services. That’s why this was introduced as general audit measure.

FP: Do you know why this was introduced in September 2022, rather than at an earlier stage? Do you know why there was that delay?

TM: I’m not fully sure as to why it was introduced at that point, however had been some Interface Forums we were having with Hertfordshire Partnership Trust, who run the learning disability services. This is not specific to autism, generally learning disability services, we sometimes do have patient in adult mental health service who may have previously been under learning disability services, or they might be some patients who straddle both services.

I do remember being part of that Interface Group where the Green Light Toolkit initiative did come about, can’t say for sure came out of those interface forums or another specific reason why this was introduced, but it definitely identified in that interface forum might be gaps in our services, and how do we identify gaps, and was discussion in that group about Green Light Toolkit [missed further answer]

FP: Yes, is what seems to happen, was some kind of sharing of good practice between different Trusts and during a meeting in September 2022 Herefordshire said we have this tool, its working well, is that how it came about do you think?

TM: I cannot say for sure but I remember discussions in there, but at same time the learning disability services our Trust provide in Oxfordshire, they have used this Green Light Toolkit. It could very well have been a national initiative, but it’s difficult for me to comment on that for sure as to why it came about.

FP: I think in your statement you suggest it was developed by the NHS in 2004 which was why I assumed was a national initiative, and gap being rolled out in Oxford Health Trust, but perhaps that’s as far as we can take it. So we’re sure on how far audit process gone, you mentioned audit September 2022 for inpatient wards, and reviewed since. How does that work in terms of Community Mental Health Services, and how they are being audited in terms of autistic provision?

TM: So, as I have been very openly mentioned, the update from Community Mental Health Teams, the response rates weren’t consistent across different teams, so it’s been very difficult to identify as to in particular specific teams or Community Mental Health Teams how, what is the current standing. So that’s why the thematic feedback was given to the commissioners, and what the plan is for that audit to be refreshed, as part of that Trust-wide Autism Strategy.

FP: As of now, am I right in thinking there hasn’t been a systematic audit of Community Mental Health Teams, has been confined to inpatient teams, is that the position?

TM: No. The audit has been conducted, but the results weren’t as informative as we’d have liked for inpatient services.

FP: Right, in statement… audit in September 2022, that was reviewed. You’re saying there has also been an audit of Community Mental Health Team, but the results of that needs followed up as they don’t give you clear enough data of where things stand?

TM: Yes

FP: Is there a timetable in place of when that will be done?

TM: Is part of our overarching strategy to scope out and identify those gaps, this was a more local initiative but now Trust-wide and system wide as part of Buckinghamshire Autism Strategy on Neurodivergence, not Trust strategy. That work has only very recently started, so in terms of timetable for this particular thing, I don’t have that. As you can see in the Strategy Development Plan that has been put forward, we’re still very much in the approval of the draft strategy phase, right now.

FP: Right.

TP: And identifying what initial actions would be delivered, the timetable for that is yet to be formalised and presented.

FP: OK, thank you for explaining that. In terms of the service you mentioned earlier the Reasonable Adjustments Service, I think called the BARA Service. There’s a reference in your statement to all autistic persons, with confirmed diagnosis, that caveat, are entitled to a multi-agency Care and Treatment Review, which sounds great, an amazing thing I’m sure. Want to understand how much capacity there is in that service, would that have been available to someone like Fern realistically?

TM: Let me clarify the question are you asking about Care and Treatment Review specifically?

FP: Yes, firstly in terms of those Care and Treatment Reviews, sound comprehensive way to support people, especially complex cases like Fern’s, sounds like a positive way of bringing professionals together, would be available now to someone like Fern?

TM: Care and Treatment Review for patient with confirmed diagnosis of autism who are inpatients, or at risk of inpatient admission. That is where Care and Treatment Reviews are carried out. This is the ICB’s responsibility, to ensure that anyone with autism or learning disability who has an admission to a ward, or is at potential risk of admission to the ward, has these Care and Treatment team.

That is not the BARA Team responsibility, they assist perhaps, but if patient admitted onto the ward the named nurse, the key worker, perhaps inpatient psychiatrist if appropriate, they would be part of that CTR, rather than just BARA Team person’s responsibility, it is the clinicians involved in patient care and other agencies involved in that person’s care, would have a joined up review meeting.

FP: OK, so that’s very helpful to understand, a few things follow on from that for me. One is you mentioned it being the trigger for one of these CTRs would be someone who is either an inpatient, or is at risk of being an inpatient, for those circumstances to apply someone would need to have, would they not, have a psychiatric illness on top of their autism? In addition to such that they could be an inpatient? Is that a fair assumption?

TM: It depends, sometimes patients do get admitted without a clear mental health diagnosis in the process of assessment, could be provided a diagnosis.. for example Section 2 of the Mental Health Act is also for assessment, outcome may or may not be clear mental health diagnosis. The reason as I understand it is these CTRs have come about is because we know people who have autism and learning disabilities don’t fare well in inpatient wards. These are quite intense environments, hence need to adopt least restrictive practice, where at all possible.

One of purposes of CTR is that, also in case inpatient care is needed, that all the sensory adjustment or reasonable adjustments are made within that environment for the patient. As well as what will be, how we can ensure a quick discharge within the community and community care can be provided to ensure person doesn’t need to come into care.

C: A clarifying question, if I may, would it apply today for Fern for short admission to Warneford, when she’s there she’s an inpatient but not sectioned, would that CTR apply to her?

TM: It would

FP: So even a short admission as a voluntary patient, that would attract this review?

TM: It’s difficult sometimes these reviews can take few days to organise, but at same time if someone is struggling in community, receiving crisis care, also applies to patient at risk of admission or re-admission [fuller answer missed]

FP: I think you alluded to … need to convene a number of professionals from different organisation…. Short admission, couple days in Fern’s case, by the time you could convene that Fern was no longer an inpatient, what would happen now? Would CTR still take place, or would they say Fern is back in the community, let’s leave it to the Community Team to address that?

TM: Its hypothetical, isn’t it?

FP: It is

TM: It is very difficult to arrange very, very quickly when multiple agencies are involved. As I said we have to report it to the ICB. The ICB are responsible, anyone who gets admitted has a CTR, this is a mandatory requirement. What happens for short, again this is only, we’ve been auditing it on our inpatient wards in the last year, latter part of last year also, made the staff aware this is a requirement because we were not fulfilling the requirements in the first part of the year. So we did put in special measures so anyone gets admission, gets that.

The purpose of CTR is very specific really, for inpatient admissions. Yes, overall might be benefits of having this multi-agency review but that sort of a thing would happen within community team if multiple agencies involved as part of professionals meetings, rather than just CTR. If patient is in education, additional requirement of CETR [fuller answer, missed, apologies].

FP: Just one last thing on this, your, help me to understand one part of the process is creating this pathway for multiagency, another step of it is making sure everyone understands that’s an option or requirement that’s available. Is it your understanding now, do you have a specific understanding of how many autistic people admitted to hospital are in fact receiving those reviews?

TM: We could find out, the expectation is patients with diagnosis of autism they get a CTR review. I very much doubt would be 100%, ideally want keep admissions really short, or not admit if at all possible. This can be found out, yes.

FP: Just one last thing, in terms of your observation that for an autistic person, inpatient environments won’t be the best place to facilitate treatment, obviously depends on person and sometimes is necessary. If that’s right, do you think it would be helpful if the CTR process is taking place before admission, rather than a reactive process when patients are admitted? Is that something you feel based on your clinical expertise?

TM: This is more applicable for planned admissions, lot of times in acute inpatient care for adults that Oxford Health operates, these are acute inpatient wards, usually the admission that happens is crisis admission, or we have very high numbers I’d say 90% of patients are detained under the Mental Health Act, generally very severely unwell, with a mental disorder as well. It’s I suppose if it was an admission to Rehab or a Learning Disability ward, it can be a bit more planned. I would say it might be possible, but for acute admissions difficult for me to comment practically whether it would always be possible. Let’s say if someone is under Crisis Team and at risk of admission, yes CTR could happen then.. trying to provide acute intensive care at home for the patient… majority of scenarios where admissions happen in emergency states, and the bed state is such that it is difficult to you know have very planned admissions in an acute setting.

FP: Is it fair to say that this really valuable process isn’t really about Reasonable Adjustments, as much as it is about treating people who are acutely unwell, is that a better way to understand it?

TM: Absolutely, anyone who gets admitted to an acute mental health ward, anyone with a mental disorder should be admitted to the ward, not an autistic person who does not have a mental disorder. Is about meeting the acute needs of the mental disorder, that is usually the purpose of admission, yes that would be the purpose of CTRs would be. Perhaps what is it we did not do prior to the admission, that led to the admission, so future admissions don’t happen.

FP: Umm thank you, that’s helpful to understand. Lastly in terms of advocacy service, think you said you have to make a referral because you don’t provide that directly. Do you have a sense of how easy or difficult it is at the moment to get referrals for autistic persons who do need that advocacy, is that something you’re able to help us with?

TM: What we do not have is, specifically an advocacy services for autistic people. Its my understanding is the advocacy service, for example POhWER they will have advocates across, whether specialise in particular area, I do not know that. Usually as it happens in teams people do have specialist interests, and sometimes is less adequate matching happens to patient that requires advocacy. How easy or difficult it is at the moment for that, I do not have the data for that.

FP: I think those are all my questions, thank you very much Dr Malhotra

There were no questions from Mr Williams for Thames Valley Air Ambulance, from Mr Trumble for Buckinghamshire Adult Social Care, from Ms Anderson for South Central Ambulance Service or from Ms Hodes for Buckinghamshire Children’s Services.

It was back to Ms Amina Graham to finish with her witness.

AG: One or two very discrete points if I may, the first one was point made, question asked of Dr Malhotra of training records in respect of staff members who’ve undertaken autism training, that is something I can confirm is available, if anyone wants to see that. Dr Malhotra wasn’t aware of that, just a point to raise.

Just finally, so clarification I think around the evidence in respect of the fact Fern had a crisis admission, and care and treatment of these and how CTR would operate in a crisis admission

C: The Warneford example?

AG: Yes, when someone isn’t under section, what is the position of when that should take place, before or after admission? How it happens if it is a crisis admission?

TM: If was crisis admission, sometimes can end up being longer than crisis admission, the expectation would be that the CTR would happen on the ward.

AG: If were a crisis admission of a day, or a few days?

TM: Practically highly unlikely… make reasonable adjustments for the patient on the ward and prevent future, review the community provision as to what led to the inpatient admission, that would be the purposes of CTR.

The coroner says he has a point of clarification. He said he can fully understand the point Dr Malhotra made about CTRs if it is a crisis admission, that they don’t have time to do that before admission or if it is a short admission he could understand that the timescale may not allow for a CTR to take place. He then asked if there was any process for feeding back to the Community Team, so that they could consider an alternative review in respect of the admission.

C: Fern’s crisis and admission weren’t flagged to Dr Afghan [Fern’s Consultant Psychiatrist in 2020], if were some structure, because there wasn’t a CTR… he’d have had to be involved, in effectively a community review instead…

TM: This is not specific to anyone with autism.

C: It was a general question, you’ve indicated the Warneford admission would trigger a CTR today, but might not have time to do it before or after?

TM: For any patient with acute inpatient admission is an expectation following discharge of the patient, is a follow up from the Community Team. We’re also putting in place the Community Mental Health Team to continue to have discussion about patient over 4 weeks or so.

The drop from intensive input on ward to sporadic care when patient is discharged, so that isn’t as acute. As part of that discussion within team meetings and additional input from Keyworker, expectation that Consultant involved in that discussion and ideally see the patients within a few weeks of discharge of that patient.

This has been a learning from another incident we had, where we did recognise sometimes has been delay in getting patient reviewed by consultant after discharge, so it is prudent we put that guideline in place. We are in the process of including that in operating procedure of mental health team.

C: I’ll put on radar there, my thoughts if CTR hasn’t happened… discharge process, some equivalent sort of review by community team is what would need to be considered, in other words flagging there wasn’t a CTR, something like that.

TM: Yes, that would be part of that, but also as I mentioned, anyone who has multi-agency leads, input from Community Mental Health Team would be slightly more intense after discharge from the ward. Now we also have functioning Crisis Teams as well, they might be part of the discharge planning process and provide input after discharge. Multiple levels to that, if CTR hasn’t happened, that can be flagged. Not mandatory for someone to have a CTR as an outpatient.

C: It might not be particularly appropriate to a particular patient… am flagging if hasn’t been a CTR, that can be raised with them. [fuller statement, didn’t catch]

Thank you very much indeed for the work you’ve done in the latter stages since the RCA, and work you’ve done since then.

[Apologies, my note isn’t clear whether the Coroner asked this next question, or whether it was a member of counsel] Can I ask one other question, not in my knowledge, in terms of the learned experienced and valuable role that can play in learning, training, policy and process. Is there any learning of the extent to which Oxford Health have invited Fern’s family to be involved in any of these things?

TM: I personally on behalf of the organisation would very much welcome, anything, in way as professionals we are learning from family and patients, it’s an added bonus to us, of course. The other thing I wanted to say is that I’m extremely sorry for your loss, and if you’re open to having further discussion meetings I’d be more than happy to see you again.

Fern’s family indicated their agreement for that.

The coroner then discussed timetabling, and it was agreed the final witness, would be heard after lunch, and that Interested Person’s would have seven days to make submissions to the Coroner in relation to Prevention of Future Deaths matters specific to Buckinghamshire Children’s Services and Oxford Health.

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