Blog > Breakthrough Positive Practice in Mental Health – taking service user involvement to the next level


15
May

Breakthrough Positive Practice in Mental Health – taking service user involvement to the next level

Service user involvement is a fundamental aspect of person centred care, it is an area where the rhetoric has been positive, but often the reality is tokenistic and sporadic. With this in mind, we sat down with an inspirational service user; Tony Russell. Alongside his wife Angie, Tony founded Breakthrough; a nationally recognised mental health service user organisation, known for identifying, disseminating and championing positive practice. Their 20 years combined experience as charitable contributors and service users, allows Breakthrough to offer a unique perspective on qualitative research, training and service improvement.

 

What led you to set up Breakthrough, what was your main motivation?

Not only have I always been a natural campaigner – championing the causes I am passionate about, but I have had two spells in a psychiatric unit. Having suffered from stress, anxiety and depression for many years, I know first-hand what mental health care is like in this country. There is nothing worse than the feelings of sheer helplessness and misery that are part and parcel of depression. It is not something I would wish on anyone.  I therefore wanted to use my own experience (good and bad), to do what I could to improve mental health services for other people.

I believe to bring about change you need to sit at the table with the decision makers, and I wanted to do that with Breakthrough – really make a positive difference. I believe passionately in the NHS and the people who work within it, but it isn’t great at recognising what it does well. Therefore someone should do it for them.

Also on a personal level, I need this. When you experience bouts of severe mental distress you need to find a coping strategy – at least I do. Campaigning and channelling my energies into something so positive helps me.

 

 When you experience bouts of severe mental distress you need to find a coping strategy – at least I do. Campaigning and channelling my energies into something so positive helps me.

 

Why do you think it is so important to celebrate positive practice, not just in mental health but in general?

I spent eight years working with the John Lewis Partnership, who I believe are the best in the customer service business. One of the keys to their success is that they look after their staff and I don’t believe the NHS is very good at that. I firmly believe that whatever the service, users would have a better experience and be better looked after if the people working for it, felt appreciated and valued by their employers – especially in the NHS, were better service means better care. It is an absolute no brainer that it’s important to identify, share, and reward those doing things well – it can only drive up the standard of service delivery, and in an NHS context, the standard of healthcare.

 

How would you describe your experience of care as a mental health service user?

My experience as a service user has been that services are inconsistent and disjointed. Having said that, I do believe there is a perfect mental health service out there – it’s just not all in one place, or available to everyone!

Waiting times are an area in need of closer attention. I know only too well the negative impact that having to wait for treatment can have on you and on those around you. When you are at crisis point, and awaiting treatment, there is an overwhelming feeling that there is nobody there for you and it is terrifying. You know that going to see your GP just isn’t enough, but that is all that is available to you. The feelings of despair can be unbearable.

It troubles me that even though I knew all the right people, and had knowledge of how to work the system to see someone, I still had to wait months. I am really concerned for those who have to rely on their GP to access the service for them. I’ve known people to wait longer than eight months plus, as well as others who have been urged to seek private treatment instead. Your average GP has little formal training in mental health, and because of the immense pressures on their time, they will often take the easy option of doling out anti-depressants rather than undertaking a longer assessment needed for a service referral.

Having said that I also think user involvement in mental health services is light years ahead of other parts of the NHS, although I fear there is still some tokenism.

 

It troubles me that even though I knew all the right people, and had knowledge of how to work the system to see someone, I still had to wait months. I am really concerned for those who have to rely on their GP to access the service for them. I’ve known people to wait longer than eight months plus, as well as others who have been urged to seek private treatment instead. Your average GP has little formal training in mental health, and because of the immense pressures on their time, they will often take the easy option of doling out anti-depressants rather than undertaking a longer assessment needed for a service referral. Having said that I also think user involvement in mental health services is light years ahead of other parts of the NHS, although I fear there is still some tokenism.

 

What do you think are the biggest issues with mental health care but equally what is done well?

I think the biggest issue is it doesn’t receive a fair share of the NHS budget, and much seems to depend on whether the relevant CCG has any genuine interest in mental health service delivery. There is a greater lack of consistency in services now than there has been in the 20 years plus that I have been actively involved. The lack of a mental health tariff is also a concern, as surely providers should be paid more for seeing more people – as the acute sector are.

What concerns me as a patient, is how difficult it is to access appropriate services when you really need them – which goes back to the lack of consistency I have already mentioned.  When I am well I am a strong person, but when I am mentally unstable there is no worse feeling than not being able to access the appropriate service quickly. From our work with Breakthrough I know of some fantastic services around the country – which makes it even more frustrating when you can’t access them yourself!

 

What concerns me as a patient, is how difficult it is to access appropriate services when you really need them – which goes back to the lack of consistency I have already mentioned.  When I am well I am a strong person, but when I am mentally unstable there is no worse feeling than not being able to access the appropriate service quickly. From our work with Breakthrough I know of some fantastic services around the country – which makes it even more frustrating when you can’t access them yourself!

 

On a positive note, in the three years since we have brought back the Positive Practice Awards, lots of fantastic work going on around the country has been highlighted. We just need to recognise it, share it and reward it- something the NHS isn’t good at.

 

Why do you think mental health was such a key election platform subject in the last general election?

I think because many of us (and I would definitely include Breakthrough in that statement) have spent a huge amount of time lobbying behind the scenes.  There are a lot of fantastic people on the front line delivering services but there is and will always be a need for others to be working hard lobbying behind the scenes. Whilst mental health may have more of a political profile we need to be wary of not becoming complacent, because frankly the government of the last five years has been big on rhetoric and short on action.

 

What do you think would help to improve mental health care in the UK?

I think that mental health care funding needs to be reassessed in general. It’s not helpful if the only way you are able to allocate funding for a service is to take it from another. There is an expression “robbing Peter to pay Paul”, that sums it up for me.  Also CCGs need to take a fairer approach, and treat mental health in the same way as they do acute care, after all, ‘there is no health without mental health’. Nobody can do their job effectively without adequate resources, particularly as the demand on mental health services is increasing all the time!

 

CCGs need to take a fairer approach, and treat mental health in the same way as they do acute care, after all, ‘there is no health without mental health’. Nobody can do their job effectively without adequate resources, particularly as the demand on mental health services is increasing all the time!

 

What values of Breakthrough are you most proud of?

We are a tiny organisation that punch well above our weight, and we do this on very limited resources.  There are very few people who we cannot pick up the phone to talk to.  I am also proud of our input into the development of the Support Time and Recovery (STR) worker programme; and that we were the first to deliver service user led assessments of mental health services.

 

What achievement stands out for you as a highlight so far?

Being able to support and run the Mental Health Awards with independent funding, without the need for central funding. It allowed us to really celebrate the positive people and services who are making such a difference without restriction. Being independent has not dampened our influence. If anything it has strengthened our voice and allowed us to have some influence and say with policy makers in the mental health community.

 

As one of the judges for the National Positive Practice in Mental Health Awards, were there any stand out initiatives from the 2014 awards?

It’s really difficult to pick out one or two as we find all of our nominees inspirational! Everyone has their own opinion on what constitutes “great practice”. The best way is to judge for yourselves by reviewing the Positive Practice in Mental Health 2014 Awards brochure.

 

Are there any stories/ submissions you have found particularly inspiring as a service user yourself?

We are inspired by the front line staff we meet constantly on our visits to Trusts who never fail to lift our spirits. One nomination that I would like to single out is Mark Thorpe – a volunteer and service user of Sheffield Health & Social Care NHS Foundation Trust. He works full time at SPACES (formerly adult mental health day services) as a support worker and when he’s not working he is volunteering on the in-patient wards at the Longley Centre – even on bank holidays and over the Christmas periods. His dedication to the service and more specifically the people that use it never fails to wow me. Being a service user as well, he views care through a patient’s eyes and knows exactly what they need. He tirelessly organises activities for inpatients; bingo, karaoke etc… you name it he has organised it.

For many service users, including myself, an in-patient admission can be very distressing and disempowering. An approach like Mark’s, that shows such a high level of empathy, is massively appreciated and allows people to feel part of something, to even form a community while in hospital. Not only does it make life that little bit easier while in care, but it also helps to bridge the transition back to the community when the time comes to be discharged. It may not sound like rocket science, but it is necessary and a level of empathy that very few people show. The NHS needs more Mark’s – and so does the world!

 

 For many service users, including myself, an in-patient admission can be very distressing and disempowering. An approach like Mark’s, that shows such a high level of empathy, is massively appreciated and allows people to feel part of something, to even form a community while in hospital. Not only does it make life that little bit easier while in care, but it also helps to bridge the transition back to the community when the time comes to be discharged. It may not sound like rocket science, but it is necessary and a level of empathy that very few people show. The NHS needs more Mark’s – and so does the world!

 

What’s next for Breakthrough?

We are constantly busy developing the Positive Practice Mental Health Collaborative, which we are the secretariat for. Outside of that though, we will continue to build and champion initiatives that allow us to carry on influencing future policy developments, whilst celebrating and sharing the people and services that are working effectively in mental health.

We are increasing our mental health awareness training with MPs, working with them to increase their understanding of mental health service user experiences.

We will continue to build on our work around the role of the police in mental health. They play a pivotal role in areas such as street triage, crisis care, custody liaison and diversion, and it’s really important they understand mental health experiences and treat them with their condition in mind, not assuming that they have criminal intention. We have worked hard to put partnerships in place to ensure that we can support those wishing to work together collaboratively and be educated about the reality of mental health experiences.

 

What is your ultimate goal for the organisation?

Without question to make a difference. To continue to have positive influence on mental health care and practice, and in doing so, to keep my own depression at bay.

One of the other things we would like to do is to give a voice to the smaller front line mental health user organisations, as often only the voice of the larger mental health charities is heard. One of the factors that inhibits progress in mental health is that there are so many diverse organisations all doing great things. We need to find a way of speaking assertively with one voice on the issues we all agree on, instead of working individually and countering each other’s voices out.

 

 Without question I want Breakthrough to make a difference. To continue to have positive influence on mental health care and practice, and in doing so, to keep my own depression at bay.

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