Chief Exec's Blog - Outrage Continues...

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13 January 2020

Phoenix Chief Exec Karen Biggs follows up her recent blog ‘No Apology For My Outrage’ by looking at the state of treatment for those people with the most complex needs.

Outrage Continues…

We discovered this week that one of the areas with the highest levels of drug related deaths in Europe has underspent on its drug and alcohol treatment budget for the last 2 years. I am sure there is a reasonable explanation and I await a response to that particular example. [1]

I am increasingly hearing that people are not asking for help from services aimed at those with the most complex needs. The reason for this is blindingly obvious to me and I am sure for many of us working directly with people who are labelled as complex, or ‘hard to reach’. What feels different about now is that we somehow seem to think that this is okay.

Maybe it is a ‘groupthink’ that comes from years of austerity. Have we become accepting of health inequality because we see it everywhere we look? And yet people are literally dying on our streets from conditions we know how to treat.

Barry’s Story

Barry found himself homeless after a relationship breakdown. Living on the streets with little contact with family and friends took its toll.  Barry accessed community treatment but found it hard to sustain his treatment programme whilst homeless or in hostels. His mental health deteriorated, that made it harder for him to access stable accommodation and sustain his drug treatment programme.  This was Barry’s spiral of a life for two decades.

I’d like to say that Barry’s experience was an unusual one, but it isn’t.

Let’s just take what we know of the life experience of the people who access our residential Registered Care services.

85% of people who are in our Registered Care services have experienced some form of trauma – domestic violence or sexual abuse. 66% have a diagnosed mental health condition. 55% have been homeless.

Most have accessed A&E over the last 12 months and many between 3 and 12 times in the previous year.  

And, I should have said eventually access our Registered Care services. From the time people are considered for care in a residential setting it can take between 3 to 12 months to get through the funding process, and they are the successful ones!

The UK’s clinical guidelines say that Registered Care services are -

“especially suitable for those with the most complex needs and for those who “have not benefited from previous community-based psychosocial treatment” (NICE 2007). ……… there will be some people who desire to go directly into residential treatment and some may benefit from doing so. Such decisions will need to rely on a best clinical judgement.” [2] (Drug misuse and dependence UK guidelines on clinical management 2017)

And yet in 87 of the 150 areas in England less than 1% of the treatment population gained access to Registered Care Services.

So why is it so hard for people with the most complex needs to access treatment that works for them?

Well in Barry’s case he wasn’t offered access to Registered Care for a number of years. He didn’t even know it was something he could consider.

There are a number of reasons people don’t get the help they need when they need it. Those bespoke pathways for people who need more guidance and support to access services are being eroded. Not everywhere, but in a lot of areas the resources to reach out to people in their places (not ours) have been lost. The phasing and layering of services to meet the full range of people’s needs have been lost. A whole range of effective interventions set out in the clinical guidance have been reduced to extinction levels in whole swathes of the country; needle exchanges, outreach services, family support services as well as the specialist interventions that support different specific needs and complexities such as older people’s services, women’s services, services for young people.

But Barry did eventually get the help he needed. By the time he got to Phoenix’s Registered Care service, he had very low level of physical health, high levels of anxiety, very poor mental health and self-esteem. He says he got to us because his care manager “believed in him and fought to get him the help he needed”. Fighting for health care? Sadly, this story is all too common

I’m hesitant to write the next paragraph because there is a danger that talking about how hard it is for some people to get the access to healthcare they need, will put some people off trying. So, only read the next paragraph if you promise to get to the end of this piece!

In some, and by no means all areas, the process to access funding for Registered Care (remember the intervention in the guidance that is most suited to people with complex needs) has become so onerous, workers describe it to us as a ‘Dragon’s Den’. Many areas expect case workers to go to pitch for funding for their client. By that time, they expect the client to have demonstrated their commitment to treatment.  They expect the worker to ‘make the case’ for funding based on their assessment of the individual’s commitment to recover. Workers find these processes so onerous they are reluctant to put themselves, and their clients, through it. They tell us they feel it is counterproductive to their client’s treatment journey to raise expectations and exert that level of pressure on them.

And as if that wasn’t draconian enough - between a quarter and a third of people in our registered care services had to go to these panels themselves.

Over the last four years Phoenix has subsidised NHS healthcare provision to the tune of £2.1m. We have done this supporting people who didn’t make it to, or through, these panels and funding processes. We have also funded people to stay and complete a treatment programme when their funding has expired.

Theresa’s story

Theresa approached us after hearing about one of our services on the radio. She had tuned in just at the right time. Her sons had just left home and she was now starting to bring her attention to her own needs. She had lived for years in an abusive relationship. She did her best to protect her boys from the worst of it and self-medicated with alcohol and prescribed drugs to give herself the best emotional protection she could.

She called us and we helped her navigate her way through the local processes to get funding, carefully and sensitive of her high-risk situation.  She called us the day she got the funding to say she was coming, a good moment. We said great and started to make plans for next steps, we asked her how long her funding was for. She didn’t understand the question. Why would she? why wouldn’t she think after she had taken that brave step to make a change to her life that our NHS would support her along the way with the treatment she needed?

Theresa had been given 2 weeks funding for her treatment.

Where else in our health and social care system we would we do this? As a sector we rightly say that methadone programmes shouldn’t be time-limited but we disempower our clinicians from making a sound judgement about psychosocial treatment programmes in line with the clinical guidance.

Change our ‘Groupthink’

If we do have a groupthink that it’s okay that people can’t access the help they need, then let’s stop thinking it now.

Let’s use the guidance developed by experts in our field and let’s trust them when they say…

“1.2.1 Drug treatment is effective

The effectiveness of well-delivered, evidence-based treatment for drug misuse is well established. UK and international evidence consistently show that drug treatment – covering different types of drug problems, using different treatment interventions, and in different treatment settings – impacts positively on levels of drug use, offending, overdose risk and the spread of blood-borne viruses. For a significant proportion of those entering treatment, drug treatment results in long-term sustained abstinence.” [2] (Drug misuse and dependence UK guidelines on clinical management 2017)

Let’s remember that people in the midst of their addiction to drugs are also experiencing trauma, mental health issues, desperation and hopelessness. They need support and encouragement from specialists with expertise and experience to help them access the right support.

Whether that is a consumption room or a Registered Care service, it is not okay to say they didn’t get the right help because they didn’t ask the right question or pass the right test.

The end of these stories

Well, the stories so far…

Barry is doing well, he completed his treatment and has moved on to our supported housing service. He is a confident, engaged and delightful man to be around. He is a role model to those around him and I am very proud to know him. I learn something new from him every time I am with him.

And Theresa?

We took the two weeks money, we made it clear to the decision makers how wrong their decision was, and Phoenix funded her to complete her full treatment programme. We also provided support for her when she left so she moved on confidently, safely and empowered to rebuild her life with her boys.

 

 

 

[1] I am also sorry that I picked that one out on these pages –that area is transparent enough to put those figures in the public domain, but I fear it is a pattern replicated elsewhere.

[2] Drug misuse and dependence UK guidelines on clinical management https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/673978/clinical_guidelines_2017.pdf

 

Phoenix Futures are experts in psychosocial delivery. We give people in addiction and recovery the tools and support they need to make the positive long-term changes to their behaviour and environment, that they themselves view as having a damaging effect on their lives.  

Phoenix Futures is a registered charity in England and Wales (No 284880) and in Scotland (No SCO39008); Company Limited by Guarantee Number 1626869; Registered Provider of Social Housing with Homes England (H3795).