Yesterday I attended a day at health charity The King’s Fund on the future mental of health in London. The event was for stakeholders (which basically means people who are invested in the process of planning services) and attenders included managers and professionals from Mental Health Trusts, commissioners (the people who decide what services are needed and who should be paid to deliver them), local politicians and a really good showing of service users and carers from Rethink and Mind. The aim of the day was to decide how mental health in London should look in five years time – what we should be doing more of, and what should become things of the past.
I learned a lot about what current priorities are for the people who plan and deliver the services we use. Of course, no event about the NHS would be complete without buzzwords and although this was a London event, if you live in the UK these buzzwords will shaping a service near you. There will be opportunities to get involved, but we need to be on top of the jargon used in the mental health field if we’re going to have our say. Here’s my attempt to decode some of the buzzwords, and think about what they might mean for us.
Parity. Everyone in health is worried about the lack of parity between physical and mental health care. They’re concerned about unacceptably poor life expectancy for people with severe mental health conditions. They’re concerned that only 25% of those with mental health problems are in contact with services, compared with 75% of diabetes sufferers. They’re concerned the lack of parity between mental health crisis services and the ambulance service/A&E route for physical emergencies. There’s also recognition of a need for parity of esteem between services and individuals – there needs to be a rebalancing of power (see recovery below).
What could this mean for service users? There may be opportunities to shape new models of care as Trusts and commissioners consult with service users. Eventually you may find you are treated in accordance with a new care pathway which takes evidence about what it effective and tries to ensure that access to crisis care or inpatient beds is best practice rather than a service that increases levels of distress. Increasingly it may mean that there is more integration (see below).
Peer. Peer-led, peer support, peer networks, it’s all about involving peers – that’s service users and carers, rather than professionals – more in the planning and delivery of services. There is now greater recognition of the fact that working with someone who’s “been there” can be as or more effective than being supported by a clinician. I’m broadly in favour of peer support, but I can foresee pitfalls. First of all, who is a peer? Is someone with an eating disorder automatically a “peer” of someone with schizoaffective disorder, just because they are both service users of the same Trust? Who picks the peers – do they volunteer, or are they asked? If they are paid, does this affect the relationship the have with their “clients”? Who sets the agenda, the peers or the organisation, and how well are peers supported through difficult situations? Anyone offered a peer service as part of their care would be well within their rights to ask these kinds of questions. To my mind models such as the Central and Northwest London (CNWL) recovery college (more below) are probably the most empowering. It’s a great example of coproduction, a service that is developed jointly by staff and service users for the benefit of both. Critically, the peer-led model adds something to existing services, it doesn’t try and replace a service that has been cut with a cheaper alternative!
What could this mean for service users? Increasingly we will be offered the chance to use peer services to augment the support professionals can give. Run well, peer-led services can make us feel heard and valued and provide social contact. For people looking to volunteer, perhaps as a route to a career in health and social care, peer support services may well offer useful opportunities. There is, however, the potential Trusts could run services “on the cheap” by replacing expensive professionals with cheaper peers.
Recovery. This one’s also been doing the rounds, as in recovery teams, recovery journey, recovery narrative, etc., but I think we’re getting a better sense of what services ought to mean by that. For a start, it should mean replacing the clinical notion of recovery as no symptoms and/or the ability to do something “productive” (work, study or volunteer). Instead, it means listening to individuals about what they consider constitutes a meaningful life. This is a huge shift, and means moving from “professional knows best” to “expert [by profession] meets expert [by lived experience]”. Recovery colleges are springing up across the country as a way of delivering recovery-focused interventions. Yesterday, as I mentioned, I had a chance to learn about CNWL’s peer-led recovery college, which offers around 50 courses on topics from a good night’s sleep to voting rights. Anyone can attend the course and everyone is simply a “student” rather than a service user, carer/supporter or staff member. Crucially, students select the courses that will best support their own recovery.
What could this mean for service users? If services can genuinely start to see service users as “experts” with their own ideas about what recovery looks like and how to get there, maybe we’ll finally be able to see good use concepts such as personal budgets (where service users select the services that suit them). We might also see greater use of advance directives and recovery plans and coproduction of services.
Intelligent data. Commissioners and managers are often overwhelmed with data, but how much of it actually helps them to understand and plan services? Now that GPs and other frontline staff have a more central role in commissioning (essentially, this means paying another organisation to deliver care) as members of Clinical Commissioning Groups they need more “intelligent” data to help them plan. A key part of this is the mental health tariff, or “clustering” – you may have heard it mentioned but there is usually little explanation of what it means, as it’s a very “back room” tool. The mental health tariff is part of the whole Payment by Results (PbR) model. It’s a way of measuring how resource-hungry a condition might be, with different financial values are placed on different conditions. A common mental health problem a GP could treat (such as mild depression) would be Cluster 1, for example, whereas someone in the midst of a psychotic crisis with high support needs would come under Cluster 14. Professionals use a “decision tree” to help them place a service user in the right cluster – only by getting it right will commissioners get the intelligent data that tells them what services are really needed in their area.
What could this mean for service users? If clustering works well we should, over time, see the pattern of services on offer more closely reflect each local population’s needs. For example, if services can demonstrate how many acute, serious conditions they deal with they’ll have a far better idea of how many inpatient beds they actually need. I am, however, naturally suspicious of anything that pigeonholes illness, even with the best of intentions. It bothers me to sort people into non-psychotic and psychotics conditions, in case staff interpret the former as “not in need of our input” and the latter as “in need of our input whether they want it or not.” Especially when that pigeonholing is linked to payment.
Integration. I heard a lot of positive stuff yesterday about connected services involving mental and physical healthcare, and about creating services where that clinicians come to the service user, instead of the service user being “bounced” back and forth between teams. For example, antipsychotics are closely associated with weight gain and diabetes. We know this and the problems are foreseeable – so why not have a specialist diabetes nurse on the team to support antipsychotic users in managing their weight and blood sugar? There was also a lot of discussion around integrating information. Typically, your GP will use one IT system, while your local acute, A&E type hospital will use a second, and your mental health Trust will use a third, and the systems will not communicate. I was encouraged to hear senior managers giving serious thought to patient held records, which means you take your record book with you whoever you see and wherever you see them. There was also talk of integrating newer technology such as sending text messages to remind people of appointments or gathering opinion on new services via Twitter.
What could this mean for service users? True integration is another quite revolutionary idea. It sees professionals revolving around us, rather than us revolving around their often very complex systems. Ideas like patient held records again see the service user as capable of making adult decisions as the “expert” on their own needs. We need to be careful, however, that we are central to our care without be made responsible for it – services have a duty to provide the care we need.
Overall, I was encouraged by the event. Right from the opening speeches I felt very much on the same page as the commissioners and providers; their priorities were, broadly speaking, my priorities. I was pleased too to feel genuinely listened to by the team of Trust Chief Execs and senior managers I plonked myself down beside (other Rethink and Mind activists reported the same experience sitting with other stakeholders). But I’ve been a service user rep on and off for years, and that leaves me a somewhat cynical. I would love to see some of these changes come to pass and we mustn’t now lose momentum. If I get a chance to join or speak at further events, I’ll be there, waving my banner for change.