Author Archives: fostress

BMA Patient Information Awards for Mind and Miscarriage Association work

I’m really chuffed to be able to share that both Mind and the Miscarriage Association received awards at the British Medical Association Patient Information Awards 2017 for information and that I researched and wrote.

The awards aim to ‘encourage excellence in the production and dissemination of accessible, well-designed and clinically balanced patient information’. They look for accessible information that is evidence-based and well researched. It’s also important that people with lived experience are involved in the production of the information. You can see all the award winners here.

Information for young people (for the Miscarriage Association)

The youth resources I researched and wrote for the Miscarriage Association were highly commended. They were also given a runner-up award in the special category for Young Adults. I was particularly pleased with this award as I managed the whole project, conducted the on and offline research with young people, developed recommendations and wrote the resources themselves. You can read more about the consultation process here.

It was reviewed by Dr. Hannah R Bridges of HB Health Comms Ltd who wrote:

Wow! This is a wonderful example how good consultation and understanding your audience can lead to great quality information! The Miscarriage Association has identified a need for materials to support young people, who have different experiences and support needs. The consultation, planning, and promotional plans show excellence in producing health information. This shows through in the end products – high quality and extremely well-tailored to the audience. The insight and thought that has gone into this is commendable. Take for example the ‘what happens when you call our helpline’ page – simple, highly visual, concise and reassuring information to encourage young people in need of support to dare to pick up the phone – the overall impression is one of kindness. Just wonderful.

Money and mental health (for Mind)

The information product Money and mental health I wrote for Mind was highly commended. It also received a runner-up award in the special category for Self-Care resources. This resource was one of the first to be written in a new ‘hub’ format. It involved research with Mind’s online community and social media audiences, working with bloggers with lived experience and researching common problems and support options.

Unfortunately, I couldn’t attend the awards with colleagues from either charity  – at 39 weeks pregnant it wasn’t worth the risk of going into labour on the train from Bristol, at the awards or in my brother’s shared house. But it’s a lovely way to leave work for a while.

Published in The Recovery Letters

Last year, James Withney of The Recovery Letters emailed to see if I would be interested in contributing a letter to the published anthology. The Recovery Letters are addressed to people experiencing depression. They share experiences and give friendship and hope for recovery.

I’ve always believed in letters and writing as a way through difficult times. In 2012 I wrote about the benefits of public and private writing, on and offline. In 2013 I wrote about creative letter writing for self-guidance and managing mental health and in my post ‘Understanding mental trickery, notes from depression island‘ I used islands as a metaphor for the concept of depression being such that it’s often hard to remember you’ve ever felt happy or imagine you’ll ever feel better. And when you’re not experiencing it, it’s hard to understand or even remember how it feels.  I introduced the idea of finding and making connections between a happier mind and a depressed one. These messages don’t always have to be words. But it’s this idea that forms the basis of my recovery letter.

The book is published next week. I got my copy yesterday. There are some wonderful messages from people prepared to open up and be vulnerable, to share their experience to help others.

And I’m also chuffed to report that mine is the very first letter in the book – and that is has been selected as one of 12 letters that will be on display at the 2017 Mental Wealth Festival.

Understanding eating problems – updated Mind resource

I don’t usually blog about individual Mind booklets and online resources I write or update (you can see the list here).

But my most recently completed product is pretty close to my heart. It’s called Understanding eating problems.

Changes and updates

I’ve tried to emphasise that you can find eating problems incredibly difficult to live with, without necessarily having a diagnosed eating disorder. I also wanted to make sure it was clear that you can have an eating problem or disorder without being noticeably over or underweight – and that you shouldn’t need a certain BMI or a particular diagnosis to access treatment. It was important to make sure the information was accessible and useful to everyone – including men and older women. These are both groups who are affected by eating problems but often less able to speak about their experiences and access treatment. I also tried to include blogs and quotes from lots of different people, about a range of experiences and problems.

It wanted to talk about the fact that even thinking about recovery can be scary. Eating problems can feel safe – and even exhilarating. Despite an eating problem making your life difficult, you may not feel ready to try and recover straight away. On top of this, I wanted to expand the information we provide on coping with recovery – dealing with food and eating every day in an on and offline world that can seem to spin around eating, food, weight, appearance and body image (you can read more about my own experience here). Sometimes you can look healthier physically, while mentally you’re actually feeling a lot worse. Recovery can take a long time and relapse is common.

The Information Standard

All Mind products are written to the Information Standard. This means that a first draft was reviewed by a number of people with personal and professional experience of eating problems. I love this stage of the writing process as it always gives you new things to think about, and opens my eyes areas I may not have considered or covered properly. We also make sure we consider and respond to all the feedback we receive – I’m looking forward to reading this too (whether it’s positive, negative or suggestions for improvement).

NICE recently updated their guidance around the recognition and treatment of eating disorders. These changes were reflected in the update too.

Miscarriage Association learning resources ‘Highly Commended’ in EVCOM Awards

Highly commended

I’m really pleased that the films I helped research and develop as part of the Miscarriage Association’s new learning resources for health professionals have just received a ‘Highly Commended’ in the Drama category of the EVCOM awards. These resources have been well received by health professionals too – they were given a 5* review in The Obstetrician and Gynaecologist in January.

I’ve written more about the work I did on the project here. The next step is to work with the Royal Colleges to accredit the resources. I’m currently researching the different options and approaches to accreditation at the different colleges.

Mental health in early pregnancy – the first trimester

Disrupting the balance

Little Foster-Pickup waves hello

I’m pretty good at managing my mental health. I know what helps, what doesn’t and how to recognise when I need to take better care of myself or ask for extra support.

But early pregnancy disrupted this balance. I’m nearly 17 weeks now and finally ready to write about the first trimester.

Awareness of perinatal mental health is increasing. Most people know about postnatal depression but I’ve seen more conversations about antenatal depressionperinatal anxiety and postpartum psychosis too. I’ve heard less about how to prepare for the way dramatic physical and psychological changes can interact with existing problems.

Taking antidepressants, managing eating problems and dealing with depression and anxiety

It turns out I’ve got a lot to say so I have separated them into three blogs.

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Antidepressants (Sertraline) and pregnancy

Pregnant and taking Sertraline

I’m 17 weeks pregnant and still taking the SSRI antidepressant Sertraline. I thought I was pretty firm in that decision. An attempt to stop taking it last year ended badly.  But we had to try, if only to help us work out where we sat in the endless risk/benefit balancing act.

But I was still thrown when my GP (a new doctor who didn’t support me through withdrawal, relapse and re-prescription) told me I should try to come off – “You could just stop immediately on that amount – or you could take it every other day for a couple of weeks and then stop”.

She seemed convinced the main reason I found it hard to come off them last time was because I was anxious about trying to conceive. In the time we had it was hard to explain that it was considerably more complicated than that.

Mental health agendas vs. pregnancy agendas

When you are pregnant and also manage mental health problems you have lots of people telling you what to do. Different authorities often have slightly different agendas, follow different recommendations and suggest different things. It feels like an extra layer of disempowerment and it’s hard not to get caught between what’s best for your mental health and what’s recommended in pregnancy.

I have:

  • personal experience that strongly supports staying on antidepressants
  • a well considered and discussed (with a doctor and my husband) decision to start taking them again
  • an awareness of the power imbalance implicit in a doctor’s consulting room
  • access to – and knowledge of – a lot of relevant research that emphasises the importance of maternal mental health and the danger for both mother and developing baby of coming off when it isn’t appropriate
  • an awareness that the ‘risk’ referred to here is pretty small and that everything has risks and benefits – I shouldn’t take the fact that something has a risk associated with it as an automatic reason not to do it
  • an awareness that doctors are told to advise women to stop as there is very little safety info but this is a precaution and for some women, it can be better for them and their baby to remain on medication

Questioning my decision

But despite ALL this, I still walked away from the doctor feeling pretty wobbly and thinking “maybe I should, the doctor is telling me I should after all”.

It took another discussion with Alex and some more reading and research to help me feel confident in my decision again.
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Eating problems and early pregnancy

Recovering from eating problems

Over the last year, I’ve been facing up to eating problems that have dogged me my entire life. This became particularly important as we tried (and for a long time failed) to conceive. It was really hard going but I got my cycle back and my hormones balanced – by the time we conceived my levels were fine. I gained weight until my BMI settled in the mid/high normal range that seems to be where my body naturally wants to hang out. I preferred being smaller but I was (slowly) teaching myself to feel positive about the changes.

This is what recovery looks like for me. After 24 years with these thoughts and feelings, I’ve pretty much accepted that I’m never going to be completely free of them. But I’ve learned to manage them in a healthier way, enjoy exercise and let myself eat without feeling too guilty (usually).

A naive hope for eating problems and pregnancy

I had nurtured this (naïve) hope that during pregnancy my muddled relationship with weight and eating would somehow vanish. Or at least become a lot easier as I nurtured my amazing baby growing body, forgiving weight gain and enjoying my new curves. HA. Load of bollocks.

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Depression and anxiety in the first trimester

A toxic mix

I had some very low periods and dark thoughts during the first trimester of pregnancy. The myth of pregnancy as a calm, exciting and enjoyable time is still pervasive – but there were times when I felt unable to take pleasure in anything, distant from Al and scared I wouldn’t be able to feel anything for the baby either.

  • Nausea and exhaustion were draining and left me more vulnerable.
  • Pregnancy was constantly pushing all my eating and weight ‘triggers’ and making that much harder to manage.
  • I couldn’t do almost anything I used to enjoy or that helped me manage my mental health – challenging myself with long runs, tiring myself out with speedy bike rides in the hills, skiing with friends, winning races, revelling in that gorgeous post-exercise feeling – even drinking tea and having a long steaming hot bath.
  • Nowhere felt like home – my supercharged sense of smell means that the smell of the house made me sick. It’s exhausting to have nowhere comforting to retreat to.

All of these are manageable individually but they made a toxic mix when combined with existing mental health problems.

One big anxious thought

I have a diagnosis of clinical depression and anxiety – but it’s tended to be anxiety I’ve struggled with over the last couple of years. Anxiety get’s its claws into whatever is going on and warps it out of all proportion. In the first trimester, there is a LOT for it to hook onto. Al always tells me to try not to think ‘big thoughts’ when I’m anxious but for a lot of those first 14 weeks or so I just felt like one big anxious thought.

But I also felt that dark, flat, stifling darkness of depression again. It was actually pretty scary at times – mainly at night when things often feel the most overwhelming. I’m certainly glad I kept up the Sertraline.

Referrals and support

I’m feeling a lot better now. I have a referral to the obstetrician who specialises in mental health – but my appointment isn’t until June. In the meantime, I spoke to an amazing midwife who really seemed to understand and agreed that 27 weeks was very late for starting any additional perinatal mental health support. She referred me to see a psychologist a little earlier. I’m not sure how (or if) these appointments will help but I’m keeping an open mind and making sure I have as much support in place as possible in case things get harder again.

Read my other blogs about the first trimester:

Community development and management support for Contact a Family

 

Contact a Family got in touch late last year. They were looking for help setting up their new community, developing guidelines, establishing processes and training new moderators. Over the last few months I have been working closely with them and we’re almost ready for launch.

Scoping

I spent some time on scoping work – reading existing research and interviewing stakeholders throughout the organisation. This helped me understand the different requirements for the community and develop a proposed action plan.

Online consultation

Contact a Family had done some extensive research on their digital offering more generally but I wanted to do some more consultation work with potential community members.

We chose an online consultation as this was felt to be more accessible to parent carers who could sign on at any time on each of the three days of the consultation. It also enabled us to involve parents from all over the country.

Contact a Family had chosen the community platform they would like to use so I was able to set up the consultation on a basic version of the new community. This gave parents a chance to offer feedback on the platform itself and helped to familiarise them with the site.

77 people expressed an interest in the community consultation and development. We had 26 participants in the consultation workshop, giving us 228 comments and answers to our questions. Lots of participants volunteered to stay involved, give feedback on developments and form a ‘welcome committee’ when the community launched.

The consultation took place over three days.

On day 1 we asked about what different people want from an online community, their priorities and what would put them off.

On day 2 we asked about moderation and guidelines – how we can keep the community safe without stopping people from having the discussions that help them.

On day 3 we asked participants to have good look round the existing set up and think in more detail about specific groups of users – parents of children with rare conditions, people running or looking for support groups and parent carer forum representatives.

Thank you, I’ve really enjoyed being part of this new venture and it would be a pleasure to be on the welcoming committee.

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Thinking of recruiting volunteer moderators for your online support community?

More and more charities are setting up online support communities – a space online for people who use their services to come together and share information, offer support and help each other to feel less alone. It’s almost expected now – if you don’t have a space like this, you may find people use your Facebook page or other social media pages to ask questions and support each other.

Communities are an excellent way to increase reach, help people connect and improve outcomes. Online community members (especially those who are established and ready to ‘give back’) are often more engaged with the charity and more likely to take part in focus groups, respond to surveys and even fundraise.

The need for moderation

But online communities need to be monitored and moderated. As an example, I recently conducted an online consultation for a charity in the process of setting up a new community. Participants identified a number of issues they had come across in badly moderated or unmoderated communities.

  • Posts going unanswered – or answers being unbalanced with some people getting lots of responses and some people getting very few.
  • People feeling unwelcome or overwhelmed.
  • Posts being misinterpreted or misunderstood.
  • Spam and trolls.
  • Personal attacks.
  • Judgmental or critical posts.
  • Incorrect information and advice.
  • Competition and comparison.
  • Arguments that become too heated.
  • Detailed discussion of suicide or graphic posts.
  • Inappropriate sexual content.

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