Last Saturday, we had the pleasure of having a stand at the Fibroid Forum. This was an event organised by a group of ladies from the House of Bread who have all been affected by fibroids.

The event brought together clinical experts, organisations working on various aspects of fibroids and women affected fibroids  to discuss this health issue and its treatment. There was also an open forum with an expert panel giving women the opportunity to share their experiences and ask experts questions.

In this blog we’re going to summarise the first half of the event which covered an introduction to fibroids, personal stories and an overview of the NICE guidance.  In our next blog we’ll summarise the second half of the event which covered surgical treatment, radiology treatment, aftercare and the open forum.

An Introduction to Fibroids

The event started with a welcome and opening prayer by Dawn Martin who also shared her story and stressed that fibroids are not just physical but emotional and it’s something that affected every aspect of her life including her relationships, work, what she wore and even planning her holidays.

This was followed by a short film that provided an overview of what fibroids are and then we heard from our first main speaker, Audrey Skervin, who talked through some facts and figures  as well as the symptoms.

We then heard from Yvonne Maye who discussed how fibroids have affected her. She stated that she was happy that we’ve now reached an age where women can speak openly about fibroids as when she was diagnosed many years ago issues like fibroids were not spoken about meaning that many women suffered in silence. Another interesting point she raised was the pressure that women felt at the point of diagnosis to have baby. Many doctors, and this was confirmed by other attendees, placed women under a lot of pressure to start having a family without understanding their personal situation and this added to their distress.

Fibroids Research Update: New NICE Guidelines on Heavy Bleeding

Next on the agenda was Christine Clewlow, Medical Scientific Liaison Manager at Gedeon Richter. She gave an update on interesting fibroids news focusing on the NICE guidelines.

NICE or the National Institute of Health and Care Excellence is the organisation that produces evidence-based guidance that is used by the NHS to decide what treatment should be made freely available on the NHS.

NICE has guidance on heavy menstrual bleeding which is very relevant to many women affected by fibroids, as this is one of the main symptoms. The NICE guidance on heavy bleeding was first written in 2007 and a summary version is available here. The parts of the guidance that are relevant to patients are:

• Any interventions [to treat heavy menstrual bleeding] should aim to improve quality of life measures
• A women with heavy menstrual bleeding referred to specialist care should be given information before her outpatient appointment
• Ultrasound is the first-line diagnostic tool for identifying structural abnormalities (e.g. fibroids)
• A women with heavy menstrual bleeding should be given the opportunity to review and agree any treatment decisions. She should have adequate time and support from healthcare professionals in the decision-making process

Christine highlighted the importance of these guidance  stating that they are designed to ensure that patients are being treated appropriately and women shouldn’t be afraid to challenge doctors if they aren’t following the guidance.

Christine also informed attendees that the guidance is being updated and the new guidance should be published in August 2017

In the discussion following Christine’s presentations there were some really useful recommendations put forward for women who have symptoms they are concerned about:

1. Before visiting your GP make a list of all your symptoms
2. Do your research so you arrive at your appointment with your GP prepared
3. Make a note of all your questions so you can have a constructive discussion with your GP
4. If you think you may have fibroids, be aware of the guidance so you can have an informed discussion with your GP about next steps.

This ended the first half of the event which was a good introduction into fibroids, providing attendees with a good foundation for the next half which was more clinical and this will be covered in our next blog. Stay tuned!

Last week, NHS Digital, NatCen Social Research and the Department of Health Sciences at the University of Leicester published the latest results of the National Study of Health and Wellbeing (sometimes referred to as the Adult Psychiatric Morbidity Survey).

The National Study of Health and Wellbeing Survey  is carried out every seven years and has been running since 1993. It aims to determine how everyday stresses, strains and joys affect the health of people living in the England.  It focuses on common mental disorders which are disorders that cause emotional distress, interfere with daily function but do not usually affect insight or cognition. Common mental disorders include types of depression and anxiety. Depression occurs when a person experiences low moods and a loss of interest in everyday things and experiences. Anxiety disorders include panic disorder, phobias and obsessive compulsive disorder.

The current survey focuses on data collected in 2014 and is based on interviews with 7,500 adults over the age of 16. It explored a range of areas including wellbeing, disability, physical health, pain, lifestyle behaviours, work and stress and life events. The results of the survey can be used by those working in the health field to get a clearer picture of the public’s health and wellbeing so they can plan their services accordingly.

What does the study tell us?

The study revealed that one in six  (17%) adults have a common mental disorder and more women were affected by mental illness than men with one in five (20.7%) women having a common mental disorder compared to one in eight men (13.2%).

Other disorders were also explored and it was found that one in a hundred adults were affected by psychotic disorder and autism each.  Also, one in fifty people experienced bipolar disorder and one in thirty people were drug dependent and a similar proportion of people were found to be alcohol dependent.

The study found that young women were particularly at risk of developing a mental disorder having high rates of common mental disorders (28.2%)0, self-harm, post-traumatic stress disorder and bipolar disorder.

The survey also found that common mental disorders were more common in Black women, adults under the age of 60 living alone, women living in large households, adults who were not in employment or were in receipt of benefits and in those who smoked cigarettes.

When the researchers looked at ethnicity they found that in men common mental disorders affected all ethnic groups similarly but when they looked at women there was a difference. In women, common mental disorders were more common in Black and Black British women (29.3%) compared to non-British White women (15.6%) and British White women (20.9%).

The survey suggested that depression was more prevalent among Black women and panic disorder appeared to be more prevalent in Black, Asian and mixed ethnic groups.

Conclusion

Common mental disorders are a significant issue in England and the survey reveals that these are more common in Black women and there is a need to understand why this is and provide Black women with the appropriate support to address this. As a charity we will do what we can to address this issue.

You can download the National Study of Health and Wellbeing below.

This blog is the second in a two-part series discussing alternative feminine hygiene products. This follows on from our blog on menstrual cups and this series is a result of a discussion at our recent fibroid focus conference that got us thinking about the fact that many women with fibroids experience heavy and prolonged periods. This means they use large quantities of tampons and pads and we want to ensure that women who use these products more frequently than most are aware of all the options out there so they use the best products for them.

What’s the Problem?

Over the last few years there has been quite a bit of focus on the chemicals in feminine hygiene products and these chemicals have raised concerns about their possible health effects.

Research has shown that chemicals like dioxins are found in trace amounts in tampons and pads. These chemicals are by-products of the bleaching process and whilst they are in small quantities and cause no harm after just a one-off exposure, women use these products very frequently and it’s not clear if the frequent exposure could lead to an accumulation of dioxins in the body. The WHO states that long-term exposure to dioxins  is “linked to impairment of the immune system, the developing nervous system, the endocrine system and reproductive functions.”

Additionally, testing has found detectable amounts of pesticides in five out of eleven of the products tested and long-term exposure to pesticides may affect the liver, brain and reproductive system and has been linked to autism and some types of cancer.

Furthermore many manufacturers don’t list all the chemicals in their products making it hard for women to make an informed choice about the products they use. This led to a petition calling for companies to list all the components of their feminine hygiene products which has been signed by over 250,000 people.

The Solution

In order to avoid the chemicals in tampons and pads a number of companies now manufacture organic feminine hygiene products to give women a more natural alternative.

Companies producing organic feminine hygiene products tend to used certified organic cotton as their absorbent material rather than synthetic absorbent material. They also don’t use harsh bleaching agents so their products are chlorine free and won’t have traces of dioxins.  They are also plastic free, fragrance free and many consider the environment and make their products biodegradable.

These organic products are a good alternative to the synthetic products that are widely available and it is worth searching them out.

Where Can I get Organic Feminine Hygiene Products?

One of the most well-known manufacturers of organic tampons and pads is Natracare, they have been producing these products for almost 30 years and have a wealth of experience. Their products are plastic free, certified organic, animal friendly, don’t result in fibre loss and are recommended by gynaecologists.  To find out where you can purchase their products click here.

Other organic feminine hygiene products include:

• Organyc
• NatraTouch
• Naty Nature Women Care
• The Honest Co. Feminine Care

For a convenient one-stop-shop that sells a few different brands, then you can try Be Prepared.Period who sell a range of organic feminine hygiene products.

If you’re looking for a more natural alternative when it comes to tampons and pads then why not give the  above mentioned organic products a try.

Do you use any of these products? What are your thoughts? We’d be interested in hearing what you think about this topic. Is using organic feminine hygiene products important to you? Leave a comment below.

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References

A question for women’s health: chemicals in feminine hygiene products and personal lubricants. Environ Health Perspect. 2014 Mar; 122(3): A70-5.

Feminine Protection Products: What do they consist of? 60 Million Consumers, 23^rd Feb 2016

Tampax tampons and Always sanitary towels among feminine hygience products that contact toxic chemicals.  The Independent, 25^th Feb 2016.

‘So You Think I’m Crazy?’ is an emotive drama that explores the UK’s mental health system, told through the eyes of a young black man. It uses music, poetry, rap and dance to take audiences from the streets of London to the secure wing of a psychiatric hospital. The play highlights the issues surrounding mental ill-health in the black community and questions whether the mental health system in the UK is effective. The exploration of the issues raised in the play continues after each performance with a panel discussion made up of mental health professionals.

‘So You Think I’m Crazy?’ is written and directed by Ekanem Hines, the co-founder of Know My Mind which is a Croydon-based community group which aims to highlight mental health issues from the perspective of service users and carers.

The play was launched in 2014 and has featured in theatres and events across the UK and has been endorsed by the Mayor of Croydon, Mind and Royal College of Psychiatrists, and has also received excellent reviews.

Know My Mind started in 2013 when the co-founders decided to capture the stories of users for a report on the UK’s mental health system. This report entitled ‘Tell it like it is Mental Health in the Community: Opening Pandora’s Box?’ was published in 2014 and aimed to address the fact that the voice of service users tends to be lost in academic and professional jargon. Therefore the reality of the experience of mental health patients is not fully understood. The report addressed this by challenging the system and putting forward a set of recommendations to improve the system. Following the publication of this report Know My Mind put together the script for ‘So You Think I’m Crazy’ with assistance from consultants.

If you haven’t had the opportunity to see ‘So You Think I’m Crazy’, there will be performances on Saturday 8^th October at 2:30pm and 8pm at  The Broadway Theatre in Catford, tickets are £10.

The Macmillan Information Centre in St Georges Hospital, Tooting has teamed up with the charity Thrive to support cancer patients in Wandsworth through a gardening group.

Thrive is a charity that has been in existence for 35 years and they use gardening to bring about positive changes in the lives of people with a disability, who are experiencing ill-health,  are isolated, disadvantaged or vulnerable.  This means they help people with a variety of disabilities and diseases such as mental ill-health, stroke, heart disease,  visual impairment, dementia and learning disabilities.

Their work is based on evidence that has shown that gardening improves physical and mental health which has led to the field of social and therapeutic horticulture.  This is where formal programmes involving plants and gardens are used to improve health and well-being and also communication and thinking skills.

Thrive has described the specific benefits and these are:

• Better physical health through exercise and muscle strengthening
• Improved mental health through a sense of purpose,  achieving a sense of peace and tranquillity, restoring attention and stress alleviation
• Reduction in isolation and exclusion through group work and connecting with others
• The development of skills which can lead to improved employment opportunities

Gardening and Cancer Support

As a result of the success of gardening in the above diseases, Macmillan Cancer Support has teamed up with Thrive to organise an interactive gardening group for residents of Wandsworth who are living with and beyond cancer. The programme will be led by a trained horticulturist and is available in all weather conditions as there are facilities for indoor gardening work across the many greenhouses in Battersea Park.

Each programme will last for 8 weeks and those who are interested just have to complete a very simple registration form.

More information

For more information please download the flyer below, call Macmillan on 0208 725 2677 or email  cancer.information@stgeorges.nhs.uk

This weeks’s blog post is a guest post from Nadene Clarke, the founder of  a new organisation, Voices for Autism. Nadene tells us about why she started Voices for Autism,  provides some background to this condition and shares her personal experience with autism. 

My name is Nadene and I am the founder of Voices for Autism. Voices for Autism is a non-profit organisation which supports parents/carers who care for a young person with Autism living in London. It was created for parents/carers to help spread awareness as well as create a community for parents/carers to feel a part of.

Autism is quite common in the UK affecting approximately 70,000 people. It is a lifelong developmental disability that affects how a person sees the world. It also affects how a person communicates with, and relates to other people. It is a spectrum condition which means people with Autism have a range of difficulties in common but it affects everyone differently.

Voices for Autism was born out of my personal experience with the condition. My son was diagnosed with Autism when he was 11 years old. When he was diagnosed, I felt that there was not enough support out there post-diagnosis in and around my community and whilst trying to deal with our new hurdle, I spent some time thinking of ways to build up the Autism community as it is a very sensitive subject.

My son was born prematurely so we were informed that he would have some difficulties in his childhood and it was not until he reached secondary school age that I felt I needed to do more as he was moving into a new setting so I requested for him to be assessed by a neurological team. Mainstream primary school was fantastic with all of the right support he needed but I knew it would be very different in secondary school……and I was right!

As parents we had never considered a special setting and went ahead with the mainstream secondary setting but this was a terrible experience in my eyes. He moved into a special setting soon after joining secondary school and we have not looked back.

At Voices for Autism we are striving to create a haven where we can come together to share advice, ideas, strategies etc. We want to echo the message that young people with Autism are unique and deserve the same opportunities as those without a disability.

I have been hosting coffee mornings on a monthly basis since the beginning of 2016 and they are proving so useful and are growing. We are a friendly bunch and can see that there is not enough support available for us parents/carers. The coffee mornings are set in a relaxed, informal environment where we are building strong, positive relationships and our group feels like one big family.

As a parent, it is important for me to empower and motivate others with the journey that myself and my son have been on, what a journey, but we are stronger because of it. It is vital for us to remember that we are our child’s biggest advocates and if we do not speak up for them, nobody will.

Let’s build a community, let’s build a voice!

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The Lake Foundation would like to say a big thank you to Nadene Clarke for sharing her experience with autism and introducing us to the great work that Voices for Autism is doing. If you would like more information about the support that they provide please visit their website: http://www.voicesforautism.co.uk or email info@voicesforautism.co.uk

The Eve and Grace Wellness Centre in Battersea opened its doors to the public on Saturday 10^th September 2016. This is a lovely space that aims to connect the community and promote healthy behaviours by providing education, support and wellness services to all. The services that the centre will offer will include yoga, reiki, massage,  pre and postnatal care and much, much more.

Our founder, Abi Begho, attended the launch of the wellness centre and said:

“We were delighted to attend the opening of the Eve and Grace Wellness Centre. This is a lovely space that will offer much-needed services to the community and play an important role in improving the health and well-being of its service users. We fully support this organisation, wish them all the best and look forward to exploring opportunities for collaboration”

The centre will start its activities with taster sessions from Monday 19^th September. To find out more and register an interest to attend please visit www.eveandgrace.co.uk

Macmillan Cancer Care and Croydon Health Services are inviting anyone affected by cancer to their upcoming health and well-being event on Tuesday 13^th September 2016 from 2:30pm to 7:30pm. This event has been organised for people who have completed or are near the completion of their cancer treatment.  The event aims to provide patients with the information and support needed to improve their well-being with speakers covering a range of topics including diet, stress, exercise, work and sexuality.

The event will take place at: Oasis Restaurant, 1^st Floor, Croydon University Hospital

To book your place on this course please call Macmillan on 0208 401 3441 or email  ch-tr.wellbeingMCS@nhs.net

For more information please download the poster and the invitation letter below.

Sheila is The Lake Foundation’s Cycling Club Coordinator and since joining us in March she has done a fantastic job in managing our cycling club. In this blog Sheila discusses her role and what she enjoys most about it.

Tell us about your role as the cycling club coordinator.

The aim of the cycling club is to give people an opportunity to be more active. So we organise a 2-hour bike ride every 2nd and 4th Saturday of the month. Once a year we organise a 4-hour ride taking us a bit further into the countryside and a social where we will have a meal. The social is usually around Christmas.

Organising the rides involves liaising with our wonderful instructors from Cycle Instructor. They will suggest routes and lead the group on the day. I manage bike reservations and organise our participants. I update them on what we are doing and about cycling opportunities in the local area and beyond. I also spread the word about the cycling club using leaflets, writing and social media.

What do you enjoy most about your role?

London can be both lonely and stressful. This can take its toll on us in the long term. There are physical and mental benefits of people coming together and people doing exercise. So it’s rewarding to know the cycling club is doing its part to promote well-being. The group is fun and positive. You can also chat as much or as little as you want for example. Everyone is welcome and everyone seems to be him or herself.

What has been your favourite cycling route and why?

I like cycling in any green space. There are lots of green spaces in Croydon and I’ve enjoyed discovering them.

What advice would you give to someone who is thinking of joining the club but is a bit nervous?

Cycling Instructor is a helpful resource. They offer free one-to-one and group sessions. They will instruct you in how to cycle on roads and public spaces and teach you techniques. You can do one of their courses before joining The Lake Foundation Cycling Club and can also have a refresher with them at any time. The Lake Foundation Cycling Club members are supportive. In this atmosphere we find that new riders grow in confidence.

Do people have to be super fit or an experienced cyclist to join the club?

Our cycling club members are mixed in ability and fitness. People tend to be less confident if they feel they can’t keep up. So we encourage people to maintain regular exercise outside of the club and to practice cycling where possible. One of our members went on to do the London to Brighton ride and another ride after that. Another couple of riders did a 10k run for Cancer Research UK. London is a great city for charity and fun fitness challenges and the club members seem to inspire each other to take advantage of these opportunities.

Do you have to have your own bike to be a part of the club?

We have a few cycles and helmet sets that people can reserve, this way people can try cycling without taking the lead of buying a bike first. One regular member has since purchased his own bike.

What do you enjoy most about cycling?

I like the fact that I’m being active. I think you experience our city in a different way on a bike than if you were in a bus, car or on the tube. I like the freedom it gives and it’s an efficient way to get around town. I cycled more when I was living closer to central London, which is more cycle friendly these days.

What advice would you give to anyone new to cycling in terms of technique, equipment and building confidence?

I would do a course with Cycle Instructor. Go to a good and reputable cycling shop and get kitted out with a well fitted helmet, good lights, a good lock etc. Be super safe, sensible and make sure you keep hydrated. There are lots of helpful resources out there.

When you’re not cycling what do you do for fun?

I enjoy dancing, walks and cycles in the country, cinema, theatre, cultural events and hanging out with folk.

How can people join the cycling club?

The best way is to drop us an email today at events@thelakefoundation.com. Also stay in touch with The Lake Foundation on twitter and Facebook!

Public Health England is conducting the first national survey to explore the health and wellbeing of people working in the sport, fitness and leisure industry.  This is a large industry with around 630,300 people working in the field accounting for 2% of the UK’s workforce.

Similar surveys have been conducted on people working in other sectors to determine the reasons for sickness absence. This is a significant issue in the UK with about 131 million work days lost through sickness absence.  These surveys found that sickness absence was due to ill health caused by feelings of discrimination, stress in the workplace and lifestyle choices.

This survey is being conducted to understand the general health and work status of people working in the sport, fitness and leisure industry.  They’d like to use the findings of the survey to inform employers on how they can better support the health and wellbeing of their staff.

If you’re interested in taking part in this survey, please click here for more information.

If you’re black African, black British or black Caribbean, we highly recommend that you take part so that any issues related to race and be properly identified and explored.