11/05/14 Lifeworks Cambridge

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You don’t have to be mad to work here, but…

Lifeworks in Cambridge is, in danger of being was, an NHS service for people with complex mental health needs.

This is often a euphemism for personality disorder.

People with this condition often take time to develop trust, require consistency of venue, of staff, of relationships to enable them to steer their own emotional ships through the rocky waters of life.

I can speak with some authority here because I am one such sufferer.

I have borderline personality disorder. That doesn’t mean I’ve nearly got a personality disorder, or I almost have a personality – if you feel the urge, you can read a pretty good description of it here – there are others too…

For sufferers, carers and professionals alike, I have one thing to say – people with borderline personality disorder AREN’T pains in the arse – borderline personality disorder IS.

Through the wonderful world of social media, I heard about the pending closure of Lifeworks. The users of this service were offered no consultation about the closure, just a deadline as to when they’d be referred back to their GP’s to be referred back onto another waiting list to be put on a waiting list to get a service.

For more details read here –

There is a huge problem here.

The government minister responsible for mental health, Norman Lamb, says something must be done – when he’s actually the person who must be doing it. Since there is no parity of service with physical health services – where patients are promised a maximum waiting time of 18 weeks between diagnosis and treatment – those suffering mental ill health can be left waiting indefinitely for help since NHS authorities aren’t obliged by the government to guarantee…well, anything really…

So you can guess where the limited money is going.

The users of this service did something different though. What initially started out as some notion to tie themselves to the bike sheds for a couple of hours turned into a 10 week (and counting) occupation of the building.

I don’t know about you guys, but when I told Ella about this, pretty much the first thing that came to mind was ‘ROADTRIP!’

We got in touch with Ann and Jacqui, both service users, who are the current occupants of Lifeworks and asked how we could best support them.

I’m not sure how we got there, but we decided they would benefit from our company, cake, chocolate and some DVD’s.

They reciprocated with fajitas.

One of the things that struck me most about Jacqui and Ann was that their demeanour, their appearance didn’t scream campaigner, vigilante, freedom fighter…they were two women who just so happened to be service users who felt strongly enough to say ‘NO’.

They are you, they are me when we’ve reached the end of our tether.

Only without the excuses that we often use to describe our inaction.

These people are an absolute inspiration.

The local health folk in Cambridge will say they’ve put alternatives in place – that they’ve set up GP pathways to help.

The new pathway goes something like this –

1) You start from scratch as a service user – you have to explain your story in depth…
2) Your GP may decide to refer you to the mental health ARK – which is a hub, where they assess you…
3) The mental health ARK will assess you and refer you on for treatment for your predominant loony feature – which, with borderline personality disorder (remember I said ‘complex’ earlier ?) could be anything from social anxiety disorder, agoraphobia, depression, dissociation, to bipolar disorder …there’s no telling where you’ll end up.
4) If your fortunate enough to be referred to the Personality Disorder hub, they’ll assess you and, if they deem it necessary, put you on a waiting list for mentalisation treatment. You can read about this here if you feel the need

Clinicians and therapists have been looking for a silver bullet to treat personality disorders for years.

The National Institute for health and Care Excellence (NICE) recognise personality disorders as complex conditions that require complex treatments. They recognise that service users should be involved at every stage of their proposed treatment and that they should be offered a choice in what that treatment should be.

There are a whole bunch of treatments and supports to be had out there – there’s psychotherapy,there’s dialectical behavioural therapy, there’s cognitive behavioural therapy, there’s medication, there’s peer support, mindfulness, therapeutic communities and good old pills.

Obviously, people telling you that they’ve felt a bit blue in the past, but they just got on with it and that you should pull yourself together are also incredibly helpful. Also, the curative properties of ‘why do you have to keep going on about it?’ can’t be ignored….

Yes, that’s sarcasm, and I appreciate that’s the lowest form of…

But we could put that down to ignorance, couldn’t we?

Thank goodness then, that Dr Chess Denman, the Medical Director of Peterborough and Cambridge NHS foundation trust is something of a personality disorder ninja.

She’s been talking authoritatively about said maladies up until as recently as February this year.

Obviously, being an expert in the field, she would know that should services be up for a change, then an extensive consultation process should take place with the punters and the local authority concerned.

She’d make sure the new GP pathways would have crisis contingencies in place, especially for those who’ve had the treatment but have experienced no improvement.

Surely she wouldn’t exhibit that old schoolgirl error of blaming the punter for not getting better…?

Apparently, an individual with a personality disorder who finds themselves in this system can only access crisis support when they’re on the pathway.

If someone fails to improve by the time they drop off the end of the pathway then all they have is their GP and accident and emergency…they don’t get a second bite of that cherry until they’re in complete crisis.

In my experience, that’s not the time when a person is at their most receptive to any manner of therapy.

And there’s the problem – a lack of consultation has led to a lack of choice and a lack of flexibility…in the pursuit of a results based system the outcomes for individuals attending Lifeworks have been ignored. Fewer people sectioned, reduced presentations to A&E…people feeling better (if that isn’t too subjective), and fewer 999 calls all unmeasured.

A series of oversights perhaps. Surely when Dr Chess Denman’s attention is brought to these, er, shortcomings, she’d do her best to remedy them?

Well, er, no. She attended the scrutiny committee meeting with the local authority and claimed she felt bullied when they told her about the shortcomings in the radical change of the service.

Even when she yielded, she stated she would consult service users only if they vacated the building.

Throw away your only bargaining chip when you know the alternative service has already started up?

Yes please.

The powers that be have tried other methods over the 10 weeks to gain access. Health and safety, vermin control and concern for the well being of the punters to name but 3.

These are hard times for everyone concerned – mental health services that have already been cut to the bone are being hacked 20% more than comparative physical health services.

Mental health patients account for 25% of all NHS patients, but attract only 13% of the total budget.

Why? Because there’s no parity of service. It really is that simple.

In a world where one in four of us will experience some manner of mental malady, where mental ill health is the biggest killer of men under 35 in the UK, where austerity has led to 1000 more suicides a year in our fine country, this imbalance is unacceptable.

It’s like the lunatics have taken over the…

We need NHS managers who have the courage to face up to this mass culling of our services.

We need service users, friends, families and professionals to say with one voice, ‘This is unacceptable’

You can occupy, you can raise awareness or you can make cake.

You decide.

Doing nothing isn’t really an option.

Walk a mile

Chris

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