Patients and the public give their views on NHS 7 Day Services

As a mental health service user and an NHS staff member i was recently asked by NHS IQ to give my views on what the effect of not having 7 Day Services has on patients. You can see me and other members of the public and patients giving our views here.

Advertisements

Why participation is important to individuals and organisations: an insider’s view

This is a speech i am giving at an NHS England meeting:

Everyone’s business: Patient engagement, experience and involvement

nhsenglandlogo

 

 

 

 

 

 

 

 

My name is Kat and i am the project manager for myhealtlondon’s WellHappy app for young people in the capital.

I’m also a service user and i’ve been using mental health services for about a decade now. When i was 19 i was lucky enough to become involved with the charity YoungMinds as part of their participation project for young service users; the VIK Project. That project has sadly ended now but was a huge part of my life for 4 years.

I came to this event knowing that i would be the only service user (at least openly) and the youngest person here so i’m here to talk to you about a couple of things from my own experiences, especially in relation to youth services & mental health although a lot of what i have to say has much wider applications.

And as much as i am very thankful for the invitation to speak today it doesn’t sit right for me. I’m not special and i am not representative of the areas i campaign around, especially the somewhat catch all group of “young people”. After all how can one person be?

I consider myself to be incredibly privileged to stand here in front of you today and share my experiences with you. But i kind of wish it always me on the stage!

And believe me i’m not the only one out there with an opinion, with things to say. But unfortunately there are still a huge number of barriers in the way of young people actively participating in not only the services they use but their own health.

Some of these barriers are tangible, things like running participation groups at times where young people are not able to attend, but a lot of them are more insidious, they are part of a culture which i believe needs to change.

It’s a problem that is widespread and not just applicable to health services. Young people are all too often  dismissed as being apathetic and disengaged with nothing worth saying. We’re told our exams are getting easier and we’re getting stupider and fatter.

And the media is full of awful depictions of the worst side of a very small number of young people. I work with a lot of young people from Tottenham and the surrounding area who live in the areas worst affected by the riots a few years ago. They speak of their despair at the way young people were targeted by the media. Never mind that some of the looters and vandals were grown adults, there was even a teacher in there! All the focus was on them.

In fact a whopping 76% of all press coverage on young people is negative and a shocking 39% of adults cannot not think of a single positive thing that young people do.

Not surprising then that surveys have shown that 1 in 4 adults would cross the street to avoid young people

And if you were a young person why would you want to engage with people who had so clearly written you off before they had even met you?

This is a dangerous state of affairs when we know how incredibly important prevention and early intervention are. But would you trust official figures like politicians and police or even feel comfortable talking to your GP expecting to meet this level of prejudice?

And how as a clinician or a service are you supposed to engage with people who are actively trying to avoid you because of this? It creates a very damaging “us” and “them” culture and shuts down potential dialogues.

It becomes very easy to only engage with the loudest, most active young people who come to you. Easy to ignore the hard to reach groups, for example young men and the BME community are hugely underrepresented in mental health participation circles. And the problem with this is, yes it’s great that you’re engaging service users, but you’re still only consulting a tiny and not representative group. The more people you consult the more points of view you have and the more likely that changes will be made for the common good and not just the perceived good.

And is such a shame because participation can change lives, i’m a perfect example.

Being a young person and a service user can often leave you feeling a number of less than optimistic things about yourself. You can feel like you don’t have a voice and that your opinion doesn’t matter and will never be heard.

It’s easy to become just another statistic and to begin to feel the way that you are treated by professionals who often label you as “manipulative”, “attention seeking” or a hopeless case.

You can feel like you have no right or ability to make even the most basic decisions about your care and your life in general just because you are young and have mental health problems and this is nonsense.

And it can also be dangerous self-prophesising. If there is no point why bother trying?

I know that before i joined VIK i definitely felt like this. I wanted to make a difference and to help change the mental health system so others wouldn’t have to go through some of the things i have and would have a better standard of care but i didn’t have the faintest idea as to how to go about this and didn’t think it was possible, especially not as an individual.

After all where do you start? How do you get people to listen to you and who should be listening when the government and the NHS are so vast and feel so faceless?

But then due to pure chance i became involved in YoungMinds VIK panel and things started to change for me. It took time, it took at least 6 months before i really understood what participation was and it came as a real surprise to me! I’m allowed to get a second opinion? I’m allowed to ask, i don’t just have to sit there and have things like therapy or medication done to me and i can be an active participant in my care! Let alone actively participation in the design and delivery of services. Or being able to give feedback on government policy that directly affects me.

Unfortunately this all happened long after i had left CAMHS. Funnily enough the reason i left CAMHS was not because i was in any way “better” or “recovered” but because i was jaded, disengaged and no longer saw the point. All dialogue between myself and the team had completely broken down.

Oh and just to point out during my time in CAMHS the closest i got to experiencing participation was once being asked to fill in a small form about how i would like the waiting room to look. This in fact is quite an ongoing annoyance..if i had a pound for everytime i had been asked about a waiting room i would probably not have to work!

So just so you know for the future waiting room decor is not participation, it is tokenism at best!

Thankfully though when i went into adult services i had all this new knowledge at my fingertips and it has, overall been a much better experience. I have the confidence and the knowledge to know when something isn’t right and can now stand up for myself-for me this is HUGE. Not only that i can engage with professionals, we can have honest discussions and make shared decisions. It feels so much better to work in partnership and not just be prescribed to!

You would not recognise me if you met me 5 or 6 years ago. I could barely leave the house, i couldn’t put my hand up in class, i was petrified of public speaking. I had no self worth whatsoever.

YoungMinds have provided me and the other VIKs with some absolutely incredibly opportunities. While i was in CAMHS i never thought that i would, for example, meet politicians, go to government meetings or be able to get my voice heard through national publications and radio programs.

But through VIK all of these things and many others have been possible and it is hugely encouraging and empowering. When we speak at conferences we are often approached afterwards by professionals who are completely taken aback by our ability to present ourselves and our experiences in an eloquent, coherent manner and talk with great passion about what we feel should be done to change the system.

I think this shows that even professionals who deal with young people on a daily basis are often unaware that we are unable to express ourselves or know what is best for us. That is why being a part of VIK was amazing. It gave us a chance to prove people wrong and hopefully change some people’s minds about what it means to be a young service user and what we are capable of.

When i ask young people i come into contact with what they think their rights are in relation to their healthcare, especially mental health care, i get laughed at. In fact most of them don’t even know what their human rights are.

“We have rights?”.

Imagine if we got things right this time. If the experiences i have been lucky enough to have were common practice.  Too often participation is seen by services as a nice add on, a favour to their clientele, it’s an after thought if anything is left in the budget.

Imagine if participation was just part of the process, if we spoke about it at schools and explained why it is important. If we actually taught kids their rights. If we taught them about the services that they could use if they needed it instead of the current system when you only find these things out too late..when you are stuck in the middle of services. It’s a scary place to be when you don’t know what’s happening.

My parents have always said that the worst thing was that they had no knowledge of the mental health system before i got ill. They too felt thrown in the deep end. Unsure of what was happening, what was meant to be happening and what they were allowed to do or say. I’m so glad that because of my experiences, if my kids ever have issues, i will not only know what to do but have the confidence to help them and fight for them if i have to.

If we get things right we could have a group of people, the next generation in fact, who  are health-literate and havethe skills and the support to be empowered, confident enough to take control of their health and their role in services and the desire to change things to make them better instead of the current model i see which is enduring and then escaping services never to return or even think about them again.

It’s a big ask i know but i also know it would be worth it for everyone.

And that is why i make it a priority in all the work that i do to involve as many young people as i can. I want to give as many of them as much of the experience of participation as i did that i can so that they can grow, flourish even and help pave the way for a better, healthier future for everyone.

A day of doctors

I’m very open about the fact that i feel, first and foremost like a service user and that is a big part of my identity. So just to warn you this blog is very much from that perspective.

Yesterday i had a pretty odd day that contained a couple of notable incidents i thought i would write about.

Firstly: good thing

After admittedly quite a long time spent:

(1) putting off going to see a doctor and

(2) not being able to get an appointment due to the painfully bad booking system at my local GP, i went.

As usual, regardless of what i logically “know” is true about my mental health and its effects and in spite of the fact i have a degree in Psychology and work in this field, i doubted myself. And as usual i tried to talk myself out of going.

I’m glad i did.

The doctor (a trainee) was wonderful. I often find that newly qualified doctors come across as the most compassionate and engaged and this was for me a very positive experience. Go doctor!

I have certainly had a lot of less than positive experiences with GPs, some of those experiences have been in the very same surgery and have almost resulting in my leaving the practice.

Which shows how much of an effect having a good doctor and a good patient experience can have.

So that was good although i was advised to take the rest of the day off work and go and get some blood tests at the local hospital.

Secondly: good thing

My blood tests were done at the walk in at the local hospital and went well. I’m not going to say it was good, it was what it was but i really appreciated the nurse not even batting an eyelid at the scars of my arms.

Thank you for not staring, touching or saying anything. A lot better than i’ve had in the past when i have had health professionals make some of the most inappropriate comments about my arms in particular.

Thirdly: not so good thing

After my blood tests i went to get a coffee in the hospital cafe to perk myself up a bit before the cold journey home.

Shortly after sitting down and taking my first sips of coffee i realised that the people sat at the table in front of me were a mental health team.

How did i know this? Because they were having a team meeting right there in the cafe and talking about their cases.

Hang on. Is that an alarm bell ringing?

As i sat there drinking my coffee they discussed individual cases although never mentioning any names.

Interestingly they also talking about telephone counselling which one of them was apparently about to conduct a session of. The practitioner in question said very openly that she didn’t really “get it” and they went on to talk about it further saying that the best thing would be that you could smoke and (jokingly) drink during a session etcetera.

When i mentioned this on Twitter a friend of mine and fellow VIK said “sadly I’ve heard this before, and also a comment on how doing online therapy means you can check Facebook at the same time”

Yep definitely alarm bells at this point.

Patient Advice and Liason Service

Luckily the local PALS (Patient Advice and Liason Services) are based on site and it seemed like a good place to raise my concerns.

Having had little personal experience of PALS previous to this i didn’t know what to expect but i found them kind, courteous and very helpful.

They seemed rather unimpressed at the actions of the team and said that they will follow it up and raise my concerns.

It was really nice to be taken seriously and listened to and to be able to just walk in and raise a concern instead of more traditional methods of making a complaint which can be long, ardous and offputting.

It did make me think too about confidentiality and what we should and shouldn’t say as professionals. And gallows humour too. I know that i frequently use very dark humour to help me cope with situations and i understand that clinicians need this too. I’m not saying that they should not have those thoughts or feelings but that conversations of a sensitive nature should not be held in a public arena because you never know who is listening.

Yes i was more sensitive to their conversation because i knew what they were talking about but when you have a discussion like that in public any one could hear. It could be me, a service user who knows about rights and rules..or it could have been a family member or friend of one of those patients.

So yes i definitely feel that i’ve seen some very strong examples of both good practice and bad. A very interesting day all in all.