Blog > Part two – healthtalk.org on mental health experiences, international impact and plans for the future


27
October

Luis Carrasqueiro, Chief Executive healthtalk.org

Part two – healthtalk.org on mental health experiences, international impact and plans for the future

In part two of our interview Luis discusses judging this year’s Positive Practice in Mental Health Awards and healthtalk.org’s charitable and organisational plans for the future


How did you come to get involved with the Positive Practice in Mental Health Awards?

I was asked to sit on the judging panel of the Patient Experience category and have to confess I hadn’t heard of them before this, but I have many friends who work in mental health and they were very complimentary. I have been so impressed. I’ve judged awards before, even run awards ceremonies in my previous charity. I know judges often say “it was so difficult to make a decision etc.” and you know what, sometimes it really isn’t that hard. But this was insanely difficult. There were 26 submissions and it was literally splitting hairs. I found it so hard. Some projects had zero resources, surviving on the good will of the people driving them. But there were others that were just so well organised! I think my shortlist was 20 submissions and there were only four awards. I would do it again without question, and be very open to working with them again in general. I look forward to making links.

What was the standout submission for you this year and why?

Kent & Medway NHS Foundation Trust entered two fantastic projects. One being Lakeside Lounge, a vocational rehabilitation project – I wanted to give them an award. Taking service users, in a medium security environment – not necessarily easy patients, challenging experiences. And through a work scheme, you come up with a viable business where they have the chance to recover, not just by developing skills and being occupied, but also by interacting with others in a professional environment. Incredible! I think it is quite transformational. And a sustainable business as well. All those things were surprising, unique and highly commendable.

Their other entry, the football team was also very interesting – and I don’t even like football!  I really wanted that to be mentioned somewhere, for the way it has developed with zero resources, existing purely on people giving their time to run it, is extraordinary.

Of course there can only be one winner, and the Central and North West London NHS Foundation Trust Recovery & Wellbeing College was astonishingly good! Recovery through education is one thing, but the fact you have families attending courses with patients themselves to try and understand their conditions better is something else! And going even further, how you build on that and learn it’s not just about your condition but building life skills etc. Wow! It was the second application I read, and for me it was really outstanding.

We are a UK charity but when our friends abroad are conducting similar research and do not have the website channels to share it, we can add it to our website to support dissemination

Are healthtalk.org actively involved with any other charities?

Because we are not a condition-specific charity, we are never going to be able to compete in that market for visibility. If you have prostate cancer, you probably don’t come to healthtalk.org first, you go to Prostate UK. So we are trying to work with these charities to be more visible in this area. I’m sorry to say it doesn’t necessarily always work, but when it does, it really does.

We are actually working with Macmillan Cancer Support at the moment. They have the pre-eminent cancer website in the UK, everyone goes there if they have cancer. But they could have more in the way of patient voices on the website. So we have been working with them to facilitate this. They have added some compilation videos, so people can understand what it is like to live with cancer. We’ve just completed a small trial and look forward to growing this relationship.

It’s great for healthtalk.org to get exposure through Macmillan, but more importantly it’s great more people are going to find our videos and be helped by them. We don’t care if it is on our website or Macmillan’s, as long as it is helping people, that’s all that matters.

The mental health section includes mental health experiences in Australia, Do you cover a lot on international experiences?

Our focus is really the UK, but we are international in our scope. Our chosen research methodology   was developed by the University of Oxford, and is used by a federation of research projects around the world (called DIPEx International), I think there are around 15 countries involved now, from Japan, to Korea, the Netherlands, USA, Germany and Spain to name a few, and they run similar projects. Australia have done quite a few now, and the US are just about to release their first one, which is also on depression.

We are a UK charity but when our friends abroad are conducting similar research and do not have the website channels to share it, we can add it to our website to support dissemination; especially if it is in English as it is very easy for us to share it. Next year we will host and be able to compare experiences of depression in the UK, USA and Australia.

Health systems are different but people are people. We can see what is different and what things are common regardless of location.

It is possible to soon be able to do comparative studies of people’s patient experiences around the world. Which is going to be academically very interesting.

Most of our visitors now come from the US (41%), UK (39%), while Australia and Canada represent 5% each, and the rest is the rest of the world, but mainly English speaking nations. We get traffic from all over the world, India, Portugal – I myself, was in Portugal when I first found healthtalk.org, looking for information about my father’s condition and treatment.

What has been your organisational highlight so far and why?

We’ve taken a couple of big organisational steps in recent years’ that have been really important:

Corporate relationships

We have set up a relationship with a corporate organisation – a first for this charity because it’s not in the healthcare sector, but a life insurer; Legal and General.

They want to help their claimants to understand their own conditions better, so their staff will be able to recommend healthtalk.org. Their staff will also be able to use our site to manage their own health better. There are other uses, e.g. managers can understand what their staff might be going through, e.g. if they have cancer. It’s potentially a very impactful programme and we are really proud.

Of everything, the thing I am proudest of, is all the little bits of feedback we get every day. What really cheers us up is that tens of thousands of people use our website every day. And once in a while they get in touch and tell us why.

People power

Of everything, the thing I am proudest of, is all the little bits of feedback we get every day. So you know, it turns out it’s not actually the money that really matters –  of course it is crucial, no charity, can survive on air, but it’s not why we all do what we do. What really cheers us up is that tens of thousands of people use our website every day. And once in a while they get in touch and tell us why.

For example, we had a teenager get in touch, who had been suffering from depression for a long time, and her parents just didn’t get it. She was feeling really isolated. She found the website, sat her parents down and played them videos of other teenagers with depression and let them watch and listen to their words and experiences, to understand what she was going through.

She ended her message to us with “you saved my life.” Making an impact like that touches you and it’s a great feeling.

Also we recently received a message from a husband who was looking for some information on menopause, because he and his family – his wife particularly, were going through a very challenging time. He said the website helped him so much to understand what was going on, he really felt the knowledge he gained helped him to be able to support her better. It really is the little things that really make it all worth it. We feel proud of what we do each and every day, and I’m not just saying it because it sounds good! And as I’ve said there’s just the 3 (2.8) of us in the charity, so we all share this view.

When you think that the website started from a simple concept: that ‘sometimes the best support comes from those who have been through it themselves’ – to go from that to where we are – it’s pretty incredible.

What’s next for healthtalk.org?

SEO is really the name of our game, so we are redesigning the site to optimise it for mobile use. That is going to be very important to us. Our website works on mobiles and is perfectly compatible, but it is not optimised for this kind of use. Making it so is a priority for us. It may be a technological transformation many people won’t notice, but is going to make a massive difference for us as an organisation.

As a non-profit, fundraising is never far down our agenda. Also, next year we celebrate two big landmarks, we are going to have 100 health conditions on the website and it will be our 15th anniversary as a charity next year, which we are very excited about and intend to take the time to celebrate.

When you think that the website started from a simple concept: that ‘sometimes the best support comes from those who have been through it themselves’ – to go from that to where we are – it’s pretty incredible. We haven’t just gone about collecting anecdotal interviews, but we use a really comprehensive, thorough research methodology by the University of Oxford and the NHS seal of approval for good healthcare information (the Information Standard). We don’t do things the easy way, if anything, we’ve chosen the hardest way, but we are still going. Something to be proud of and 15 years down the line, it’s important to take a step back, and acknowledge that.

What really interests me in the charity world is its impact. Understanding how you as a charity can help people. Are you achieving the best results you can, doing the most you can? If not, how can you change that?

What drew you towards healthcare?

I’m actually a scientist by background – not a medical one, but an astrophysicist. Healthcare is pervasive and important to every single human on the planet. Sooner or later we all interact with the system, and that is a very powerful thing to me. It is universal.  Random link I know, but my father at one point was a baker and I always think, everyone needs bread and everyone needs healthcare.

This is my first healthcare role. I have a background in online video resources and previously I was leading a charity which deals with using media in education.

Have you always been interested in the charity sector?

What really interests me in the charity world is its impact. Understanding how you as a charity can help people. Are you achieving the best results you can, doing the most you can? If not, how can you change that?

A lot of charities don’t even know how well they are doing, because often it can be really hard for them to measure it. I remember there was a charity that provided assistance at home to patients. I was told that for the first time in years a patient was able to look at their carer in the eye. How do you measure that? It’s a tiny thing, but it’s about capturing those small things. And changing your mind-set so that you are alert to them, and have mechanisms to capture them. That is what I really care about in the charity world.

I’m so proud of what we do. It never ceases to amaze me that, 1) we’re still going strong – especially as small as we are. It’s a weakness, but also a strength because it means we can adapt to circumstances very quickly. And 2) that people continue to be so generous, letting us into their lives, and sharing their stories and time. I love the people I work with and can honestly say I am the happiest I have ever been in my professional life. I’m so proud of what we do.

Tags: charity, Healthcare, Healthtalk.org, Internet, NHS, Social Media.

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