Transcript for Helen Killaspy

Dr Scott Clark I'll just mention in by way of introducing Helen that she’s professor and consultant in rehabilitation psychiatry at University College London and she has she has led and leads national and international programs of research and clinical work around rehabilitation.  She's an advisor for - the national professional advisor for rehabilitation services in England and Wales and former chair of the Faculty of rehabilitation and social psychiatry that Daryl was mentioning at the Royal College of Psychiatrists. She’s going to speak on addressing the international marginalization of people with complex mental health needs.  Over to you Helen.

 

Professor Helen Killaspy Thanks very much indeed for the introduction and also for the invitation to come at all and the sponsorship thank you very much to all those who have contributed to getting here and it's just lovely to be back in Sydney lovely to be back in Australia and brilliant being a room full of people who are enthusiastic about rehabilitation services and psychiatry so I'm going to talk to you about the - how we might go about addressing the marginalization of people with more complex mental health needs who are people who we're talking about when it comes to needing rehabilitation services.

 

So mainly we're talking about people with a primary problem or primary diagnosis of psychosis not exclusively but 80 percent or more than 80 percent tend to have that primary problem. And we know from longer-term cohort studies of early intervention for psychosis services that up to about a quarter of people who have been newly diagnosed with a psychosis will go on to develop very complex problems and that's been reconfirmed now a number of times so it's not as though the problem has gone away with the introduction of early intervention for psychosis.

 

We still need to think about the group who developed very complex needs. And by that we mean symptoms that are not responding to treatment, both positive and negative symptoms and also the cognitive consequences of psychosis, particularly we're talking about dis-executive problems, functional impairments of the frontal lobe and then coexisting problems, some of which will predate the development of the mental health problem of psychosis, so developmental disorders autism spectrum disorders, intellectual disability or borderline intellectual disability and then trauma attachment problems but also the things that can develop alongside the psychosis so physical healthcare morbidities are very high in prevalence in this group and so are other mental health symptoms so it's not just often about a psychosis it can also be psychosis that is accompanied by symptoms of anxiety, OCD and other problems.

 

And substance misuse issues are often present as well. So all of these things sort of gather together in a confluence of complexity but lead to very severe difficulties for the person in managing everyday life and leave them highly vulnerable both to self-neglect and to exploitation from others and our programs of research of this group have shown that up to 72 percent of this group are vulnerable to self-neglect up to 41 percent are vulnerable to exploitation from others and because of all of these problems at least in the UK setting, this group will often spend long periods and recurrent times in hospital.

 

And on leaving hospital will have very high community support needs and because of that they tend to absorb a very large proportion of the total budget that spent on mental health by both health and social care - up to 50% of the total budget goes on this relatively small group and of course there's a parallel there with physical health you will often find that the people with the most complex long-term physical health conditions of course also absorb the greater parts of the budget. So it's important to get services for this group right in order to make the best use of resources and try and keep that budget as small as you can.

 

So despite those facts this group have been somewhat missing from policy in recent years. It's our policy focus and I think the world mental health policy focus has really been a lot on public mental health's on prevention and early intervention and yet we know that people who have these kinds of complex problems have factors and predisposing conditions that a probably not very amenable to that policy focus.

 

These are facts have been known for many, many years about having a younger age of onset, insidious onset perhaps and pre-existing soft brain injury things that are not going to be easily rectified simply by having an early intervention approach. By definition this group need longer term and specialist support and my view is that the fact that they've been missing from policy for so long has been really highly detrimental.

 

Now in the UK we carried out a survey some years ago of rehabilitation practitioners and that bubble in the top left is a collation of what people who worked in mental health rehabilitation said rehabilitation was so it's not my definition it's actually a collation of what the practitioners thought it was all about and you can see from that that it's  a broad definition but it's about key things, one of which is that you have a whole system approach - rehabilitation isn't something that just psychiatrists do and it's not something that just happens in an inpatient rehabilitation setting.

 

You need a whole system of Health and Social Care and third sector providers working together to support people to optimize their independence and the whole aim of the process is to give people the opportunity for as successful a community life as possible. Services tend to be organized with this idea of a care pathway where people will come in from an acute inpatient admission ward, about 80% of people who come into the rehabilitation pathway enter from an acute admission ward but about 20% come directly from forensic services so rehabilitation services provide an important exit route for people leaving secure care. There are different types of inpatient rehabilitation unit in the UK and I won't go into the details but some are definitely hospital based and some are more community based so called wards in the community.

 

After a period of rehabilitation in those kinds of settings people will then graduate to supported accommodation often provided by the third sector or by local authorities with the clinical input coming from specialist community rehabilitation teams - they exist in about a half of the NHS organisations across England and if they don't have a rehabilitation team that clinic input will be coming from a generic community mental health team and physical health care will be provided by primary care but a lot of liaison between the two.

 

People tend to graduate from higher to lower supported accommodation over time so from residential care to support it housing or from supportive housing to what we call floating outreach where people have their own tenancy and there's a team of supporters going in once or twice a week so the idea is that you're trying to move people through that pathway to get them living as independently, as autonomously as possible.

 

Now in order to do that I think this document may have been circulated before the event you need to obviously do some specialist things - that's what rehabilitation is and they're detailed in this document which is the Joint Commissioning Panel's Guide for mental health rehabilitation commissioners in the UK and it gives a lot of detail look more than I can go into right now but there are things for all the specialists of the MDT to do rehabilitation psychiatrists do have a specialist accreditation in the UK through the Royal College and there are specialist competencies that they have to achieve in for example managing complex medication regimes and the side effects that go with complex medication regimes addressing those physical health comorbidities that come alongside the psychosis and of course being clinical leaders of the MDT.

 

A huge role for occupational therapists because a lot of the problem that we're talking about here really boils down to function so trying to help people learn or re-learn and gain the skills and confidence with activities of daily living but also with community participation is a really key part of the whole process. Of course we're also wanting to deliver evidence-based psychosocial interventions so psychologists are also part of this team and sometimes we're not able to immediately go straight into the NICE guideline on and say family interventions or CBT because a person is simply too unwell so the first steps are about how do you engage the person at all and being able to have a conversation even if it's only for a few seconds to begin with.

 

What do you do to engage someone enough that they want to get out of bed rather than just lying in bed and staring at the ceiling all day. And so this is delivered with a culture which is very much recovery oriented, where the team have to be therapeutically optimistic. They have to be energetic but calm. I've done noted that people who work in rehabilitation services tend to have those characteristics they're very energetic but on the surface everything looks very very calm indeed and that's exactly the atmosphere I'm giving from this room today (audience laughs).

 

And they have to like working with people in the long term, not need an immediate return on a day's work. Know that you're going to see very small incremental changes over many months and years and that's what you're in for you're in for the long term and when I say long term well we're talking – our research has shown that people often have been unwell been under mental health services for over 10 years before they even get to a rehabilitation service in the UK.

 

We hope that's going to be addressed because clearly people need to be identified sooner than that but they will have had recurrent admissions prior to somebody spotting that they could do with some rehabilitation. This is sort of specialist inpatient and community rehabilitation bit the length of stay.

 

There is somewhere between one and three years some places have both an inpatient and community units other places just have one or the other and that length of stay somewhere between one and three years so that's a big investment of specialist input that we put into the system and then the process of graduating through supported accommodation can be anything over five years.

 

So we're looking a trajectory of something you know around ten years so that's why we need the long-term view and that's why we need to think about services that are organized to support individuals over that kind of period of time and that's not easy to do in service planning terms. But if you do, the evidence is good, the evidence is that if you organise things like that, the majority of people will achieve a successful community life.

 

It was that a case control study in Ireland that showed that people who had access to that kind of setup were eight times more likely to be successfully discharged from hospital without readmission without things going backwards and they had improvements in their social and everyday functioning more than controls on a waiting list.

 

And we've carried out two large programs of research in England, one of which focused on the inpatient rehabilitation part of the pathway called the real study and included this big cohort and what we found is that in within two years over 1/2 (57%) of people who'd come into an inpatient or community rehabilitation unit were successfully discharged to the community without further readmission or breakdown in their supported accommodation placement.

 

14% could have been discharged but we were waiting for a place in supported accommodation so we identified this sort of big unmet need for supported accommodation as well so you put that together it's about 70% (2 thirds) of people getting through the system within that kind of timeframe.

 

And our second big program was on the supported accommodation component as a pathway to the Quest program and there we found that people progressed again through the pathway from higher to lower support without readmission without the placement breakdown - around 38% moved in that direction within 30 months.

 

We chose 30 months because a lot of supported accommodation services are commissioned on the basis of offering a service for two years so we followed people for two and a half years and actually what you find is that 38% moved through in two and a half years so that tells us that the commissioning of services for two years is just wrong. We need much longer for this group to be able to progress.

 

And then a much smaller cohort study that we carried out just in North London a few years ago - we've again found this sort of magic figure of 2/3 (67%) of people moved through the pathway in a forwards direction without placement break down without readmission over the five-year period so those gains appear to be sustained when you've got a good pathway in place.

 

But it's really important to note that only 10% of people achieve fully independent accommodations beyond the floating outreach model. So 90% of people continue to need support and again that's a really important take-home message for service planners. Those big programs of research, the REAL study and the Quest they also helped identify some of the aspects of care that seemed to drive those better outcomes.

 

From REAL we found that people who had higher social skills were more engaged in activities within the unit or in the community were more likely to move on successfully and also through the recovery orientation of the service was an important driver so services that had a recovery culture did better in terms of outcomes than those that didn't.

 

And from Quest again recovery orientation came out as being an important driver of progress but so did the promotion of human rights. And to put a bit of detail on to what that means, these domains of recovery orientation and human rights are measured using a standardized quality assessment tool called the Quirc - the Quality Indicator of Rehabilitative Care.

 

It's a free online tool that we developed in the previous study there is a version of inpatient and community-based rehabilitation units but also a version for mental health supported accommodation services. And it measures the quality of your service on seven domains so these were the two domains have actually seemed to be the most important in terms of driving move through the system.

 

And just to pick out something in the recovery orientation – so that although we've talked about the complexity and the things that lead to people needing rehabilitation, it's important that the culture of those services, as well as being therapeutically optimistic, comes from a position of being strengths-based so you're working with what people can do in order to build on that to address the things that they're struggling with.

 

So it's not all about deficits and needs, it's about strengths and also of course that you are working with people as individuals I mean that is really a very key part obviously of a recovery orientation. And including them in the thing in thinking about the way that the service runs and also in how much they want their family involved building bridges with families again families who may have become very estranged over the years of the person's illness.

 

So there's a sort of very much a collaborative culture caught by this concept of recovery orientation and this tool picks up that. The other key part is that you haven't an expected maximum length of stay, not an absolute maximum, but an expected so the unit, the services know roughly how long we're going to be working with an individual and then that allows them to think about the plans that are realistic with that person for that time frame.

 

It doesn't mean that you then you know kick them out when they hit the time frame if they still are benefiting from the service then obviously you continue that work but having that expected maximum time frame seems to really help everybody kind of keep on targets and if you don't have that, what we find is that services can become very sort of lackadaisical a bit, everything can grind to a halt it can all get a bit slow and basically get a bit institutional and you lost the star force of what's the purpose of this service. And they can't really tell you but if you have this idea of people will move through your syllabus it becomes much clearer not just for staff but for service users what's expected.

 

Now we're really desperate for a good health economic analysis of mental health rehab services and there are two underway neither of which are published so I can't really talk about those at all at the moment but I can talk about this study which is published, which was a very simple cost-benefit analysis of 22 people who came into an inpatient rehab unit in Kent.

 

Mel Bunyan led this study and they simply looked at the inpatient costs people before and after and during the rehabilitation stay and you can see that in the two years before the person came in on average there was a spend of sixty six thousand pounds a year and after rehabilitation it had dropped to eighteen thousand pounds per year but the cost of the inpatient rehabilitation was quite high, seventy four thousand pounds a year so that's a big investment to expect commissioners and other service planners to make.

 

But if you just extrapolate this up and to make the maths easy just done it on the basis of a hundred people and take a kind of ten year trajectory so three years before rehab, two years in the rehab unit and then five years after rehab and you assume that these figures we've found from these cohort studies are correct that 67 percent will do well and progress along the path very smooth manner and a third won't when you those figures in you get a total cost with rehab of 52 million pounds and that's assuming that the third that don't do well don't leave hospital which won't be the case most will leave hospital  or they will just need longer than two years.

 

So this is a worst-case scenario cost – fifty two million if you don't have the rehab though is 66 million so just on that very simple analysis you can see that the investment although expensive at an individual annual cost per person ultimately is cost-efficient.

The other good news for rehab is that staff who work in rehab services in the UK have better morale and staff working in other parts of the system. This is data from Sonya Johnson this staff morale survey across the country and you can see that the bars here is showing the ratings on the massive like burnout inventory for exhaustion, that's the grey bar and then the total burnout in the red bar it's lower for rehab and we repeated this in supported accommodation staff during the Quest study and again found that those ratings were lower than most other parts of the system.

 

So there's something good about working in rehab that staff really enjoy and that allows them to be able to manage their work later perhaps in a more satisfactory manner than other bits of the system.

 

So this is all good evidence this sort of says that this is the way that we should probably be organizing services at least in the UK and yet what's actually happened is the opposite - that since 23 we've seen large reductions in rehabilitation services, 61% of those inpatient rehab services have reported some form of disinvestment, half of them have been shut.

 

There's been a shift in provision to more community-based services, I mentioned earlier than half the Trusts have a community rehab team and they'll be working with people in the supported accommodation bit of the pathway providing that specialist clinical input and that's good you know it's not that we want to knock that, but the trouble is it doesn't actually replace the need for the inpatient component. What’s happened alongside this disinvestment is a large expansion in the independent sector of inpatient rehabilitation services.

 

This has been picked up by the Care Quality Commission who are the UK Hospital Inspectorate. They looked at all mental health providers, both private and NHS between 2014 and 2017 and noted this high number of people who were in so-called locked rehabilitation units. Now locked rehabilitation is not a term that anyone has described it's certainly not something that was in the Commissioning (Professor Helen Killaspy Guide.

 

It’s a term that has evolved through market forces. So as the NHS have disinvested in rehabilitation services, the private sector have stepped up and said we've got somewhere for your more difficult challenging people and there's a lock on a door and they've called them locked rehabilitation units and I mean it's an awful term it's a contradiction in terms and I can't imagine what it would feel like to go and be admitted to somewhere that called itself locked rehabilitation probably would certainly undermine my individual therapeutic optimism and I wonder what it does to the staff.

 

Well the CQC were very worried that these units weren't doing a good job in terms of rehabilitation they didn't have the right complement of staff, the right training to be able to deliver rehabilitative care and they basically felt that these were institutions that were warehousing people and that they were often a very long way from the person's home, hundreds of miles sometimes. So the person is dislocated from the family, from friends, from the local community and they're dislocated from their local pathway and that makes it difficult for those who are invested in trying to bring them back to the local area to supported accommodation to keep in touch.

 

The whole thing that sort of grinds to a halt. The CQC found that there are 50 inpatient rehabilitation beds in England and Wales through this comprehensive inspection over half of them now are provided by the private sector. So that was a wake-up call to us.

 

The total cost of all of these is over half a billion pounds per year and the length of stay and the costs of care in the private sector are exactly twice what they are in the NHS. So the cost per day actually is very similar but because people stay twice as long the cost is twice as much and there's no need to be able to be staying twice as long, it's about this dislocation from the pathway.

This has been picked up by the BMA who did their own freedom of information inquiry and wrote a long piece about this problem and it's also been picked up in the mainstream media and there is now a bit of a shift in the way that policy is thinking and I'll come to that later about this group. But it's not just mental health or mental health rehabilitation that this has been an issue for.

The green bars at the bottom of that chart, you won't probably be able to see her very clearly, these show the numbers of long-stay beds - mental health, learning disability and older people's beds since the early ‘70s to more or less present day and you can see there's obvious reduction over time.

 

The blue line is the rise in the number of private long stay beds across all those three markets and you can see it far outstrips where we were in the 1970s so we have got this battle really going on with a whole market which is there to not necessarily offer the best care and that's not to say that all independent sector providers are terrible because they're certainly not and it's not to say that all NHS providers are good because they certainly not either but we've certainly got this tension which seems to be running out of control at the moment.

 

So that's sort of England well in Italy which is another highly deinstitutionalized country they're beginning to pick up something a little bit similar in terms of expansion by the independent sector of so-called community residences so their long stay institutions as you all know were all closed in the 1980s and the people with longer terminal complex needs move were moved to community residences which tend to be sort of smaller facilities, 20 to 30 people, communal based and there's been a massive sort of rise in the provision of these over time, again probably in terms of new people coming through the system with complex needs suggest the building of more and more of these sorts of settings and again in this particular report from Lombardi they've been worried about that but also worried about the quality of care in the lack of rehabilitation going on in those settings. Here in Australia you know this stuff better than I do with the SHIP survey I expect the Carol may touch on it.

 

It's also picking up some areas of concern for people with more complex needs. Here you've got a system where you've got a big reliance and partnership with NGOs in providing community-based mental health care and this particular paper from SHIP is showing the sub-optimal treatment for people with long-term mental health needs getting too many drugs, not getting the right drugs, not getting the right psychosocial interventions, poor physical health care, etc, etc.

 

So we're sort of seeing indeed institutionalized countries that there's been this sort of failure to recognize this complex needs group and these are the impacts of that. And then finally the WHO did this quality rights survey very recently looking at longer term facilities in 25 European countries and I have to say the findings are just stark and depressing you can see you know lack of knowledge about mental health and the protection of people's human rights.

 

We've already shown you that the protection of people's human rights is a key driver of success, the lack of a personalised approach lack of a rehabilitative activities etc. So poor quality care for people with long term needs across 25 European countries and although you might think that some of these countries well you know it's a bit harsh some of these countries are in an early stage of developing community-based care so you know it's not surprising perhaps that quality isn't great.

 

The ones in purple are not - the ones in purple or high-income countries on the whole many of them have been at the forefront of developing community-based care so we should expect better. And then the sort of final problem or the most recent problem are changes to the welfare system that are making it more and more difficult for individuals to receive appropriate benefits that can support their recovery.

 

In the UK we've had to change from something called Disability Living Allowance to something called Personal Independent Payments. This is for anyone with a longer term condition and this report in The Guardian shows that after three hundred and twenty seven thousand people who switched from DLA to PIP. People with mental health problems were two and a half times more likely than those with physical long-term conditions to avoid any loss in their entitlement. So that's a really big issue and of course they know you've got something similar different but similar going on with NDIS in terms of people's access to the right welfare benefits that can support individualized recovery plans.

 

So why is all this happening? Why are people with complex needs marginalised in this way? Well I think there is a bit of a blind spot that goes on for service planners. To be fair they're often working to an annual financial cycle so it's hard for them to think about a ten year trajectory. There are of course economic constraints that come in and if you've got a unit that costs you seventy four thousand pounds a year it's an easy thing to just say we'll just cut it.

 

In the UK that's happened a lot because if you do that those people with complex needs may well end up in a private sector inpatient rehab unit but it comes out of somebody else's budget. Cost shunts, financial mechanisms can make that more likely and that's certainly been the case in England.

 

And commissioners not really having good oversight of the way that the whole system needs to work together. I've mentioned that they you know they're often missing from policy and I think that that's partly because there's something so kind of difficult about people who have complex needs and long-term care needs.

 

Difficult, it's sort of almost unpalatable sometimes for people to think about it they can't think about it and so they'd like to think in a kind of aspirational way that if we develop an early intervention, if we develop public mental health promotional strategies we will reduce the incidence of mental health problems and therefore this problem will go away and these data from the long-term studies just show that that is not the case.

 

And then we have a lack of service user voice, we're talking about people who are very disabled and who often or not able to advocate for themselves. I've mentioned family estrangement, so they often don't have families advocating it either. And the impact of all of that is you don't get the right care people are at risk of institutionalization or re-institutionalization and marginalization and these principles we're supposed to work within - treating people as close to home and in the least restrictive way just then get undermined.

 

And that's why a few years ago when we were asked to write a document of the European Commission is Jose Caldas de Almeida and I we made a point of including the need to plan for this group through having these specialist rehabilitation services alongside all the other things that countries are aware of and tend to want to do when they're planning a de-institutionalisation programs.

 

But in order to do that you've got to have enough money. This is the paper from Tatiana Taylor that looked at data from 171 longer-term facilities in eight European countries and data from about 1,5 service users. And she did modelling that showed that the percentage of the health budget of a country that spent on mental health is positively associated with the quality of longer term care so what you invest at the top trickles down to the bottom and then she also showed that there was a sort of threshold and that threshold was around 10%.

 

If countries spend around 10% of their health budget on mental health then in your quality of care for longer term facilities reaches a kind of optimum so it's not saying you need to invest, invest, invest, invest, but of course 10% is quite a high threshold and worldwide the figure is more like 2.8% and of course it's worse for lower-income income countries than higher you see a disparity of about 30 fold in terms of the provision of community care for low versus high-income country worldwide.

 

So that's all a bit negative but there is hope. There's some hope - coming this year the first NICE guideline on mental health rehabilitation is due to be published. Which will address quite a lot of this in terms of talking about who should be offered rehabilitation, how services should be configured, what kinds of support and interventions they should deliver, what the approach should be and how you support people to transition out of the rehabilitation service.

 

In England NHS health policy has just picked up the term rehabilitation thank goodness so we now how the NHS long term plan and for the first time in years they actually mention rehabilitation and they are also talking about maintaining so no more cuts and developing new services for this group and of course here we've heard already about some of the recent interest and developments in trying to progress this field.

 

So what do we need to do that? Well, adequate investment, yes we need a balanced approach from our policy makers and those who are investing in health care between promotion, prevention and provision to avoid marginalizing this more complex group.

That means rehabilitation and so that word needs to be out there and we need to define it and we need to be clear who we're talking about. I think from my perspective coming from the UK that this only works and we've seen this as I've shown you if you have a rehabilitation service which is local because people need to be rehabilitated within their local context and that's obviously more complex in in countries like Australia.

 

We need more research, of course everybody always says we need more research but we do need more research in this field. I’ve shown you some data today about things that have shown some glimmer of hope and glimmer of association with better outcomes, the odds ratios are very small, just above one.

 

We know a little bit more and a little bit more about interventions individual interventions from bias like those social and cultural interventions but we need more evidence to help guide that investment and this idea about long-term service planning is absolutely key to all of that and  undoing those perverse incentives.

 

So for those for whom the recovery path is a little bit more complex than others, we just really need to remember that we've got to hold on to the long term view. Thank you very much indeed.

 

Applause