BTF info for 13th sept 2014 meetiing

This article wasn't originally publishing properly, for some reason all the spacing was lost when it went live. I've now sorted this out so hopefully it will be easier to read:

I was on the panel at the 13th September BTF London Group meeting and am sharing my notes on BTF Activity for those unable to attend the meeting, below. It was a really good meeting. We followed a different format from anything we'd done before and I was quite anxious in advance about how it might go, but it was really a big success, as all the group's previous events have been. Well done to the group for creating this new Question Time format and for putting together a really good panel.

Even with three hours for the meeting we didn't quite manage to get through all the pre-submitted questions but we did most of them and as well as sharing what I know I learned a few new things as well and really enjoyed the day.

The event was filmed so the footage should be available on youtube soon. I'll post a link when I have it.

Meantime, the following may be of interest to anyone wondering what BTF does for thyroid patients. This info was sent to me from BTF HQ ahead of the meeting.  Much more info, of course, is on the charity's website .

 "Contents

1.  General info from BTF
2.  More info on the Hypthyroid Care Strategy Project 
3.  General info from BTF

 1/ In response to concern about lack of knowledge of GPs (and other health professionals) about diagnosis and treatment of thyroid disorders, we are working at improving awareness about all thyroid disorders amongst health professionals at all levels, including GPs. Below is a brief update about what the BTF is doing to raise awareness and improve understanding of thyroid disorders, including informing health professionals about the patient’s perspective:

Children

•  The BTF conference for children with congenital hypothyroidism (CHT) and their parents: we are working with doctors/nurses from the Leeds General Infirmary (who have already changed their practices as a result) and together are producing information on CHT and parent experiences at diagnosis which will be presented at a specialist nurses' session at the British Society of Paediatric Endocrinology and Diabetes (BSPED) meeting in November. See also BTF News 86, p 1. 

Thyroid Eye Disease

•  See executive report www.btf-thyroid.org/images/stories/pdf/TEAMeD_First_Report_Executive_Summary_4_page.pdf which describes the work being done to raise awareness amongst health professionals. 
•  Two-day meeting in Newcastle, May 2014: Thyroid Eye Disease in the 21st century (attended by the public, patients, pupils and international experts on thyroid eye disease), see: http://www.btf-thyroid.org/index.php/campaigns/thyroid-eye-disease/newcastle-thyroid-eye-disease-meeting

Pregnancy/Fertility

•  During International Thyroid Awareness Week (http://thyroidweek.org/en/) we issued a press release about fertility. 
• Working with a GP on a potential article on hypothyroidism and pregnancy

Thyroid Cancer

•  Short film on patient experiences of thyroid cancer – due for release in September 
• Thyroid Cancer booklet to be updated 

Hyperthyroidism

• Short film on patient experiences of hyperthyroidism – due for release in September 
• Invited to provide patient representation on working groups – Apitope (see BTF News 85, p 11) 

Hypothyroidism

• Short film on patient experiences of hypothyroidism – due for release in September.
• Worked with a GP who approached us to update a GP training module that appeared in Pulse on line – the most widely used training module amongst GPs; see: http://pulse-learning.co.uk/clinical-modules/diabetes-and-endocrinology/hypothyroidism-case-base-module 
• Investigating research opportunities 
• Produced a poster and leaflet with a list of hypothyroid symptoms which were displayed in GP surgeries in various parts of the country earlier in the year. This was done on a pro-bono basis by the company involved, and resulted in an increase in calls to BTF HQ and an increase in membership from the parts of the country where the poster/leaflets were displayed, plus requests from GP practices for further information from BTF. There has also been a 250% increase in hits to the BTF website in this period compared with the same period last year. The company has recently informed us that they have continued our campaign and increased the number of surgery sites; the information will be available until at least the end of November. 
• Endorsed the Thyroid Federation International (TFI) statement: http://www.thyroid-fed.org/tfi-wp/news/alternative-substitution-tfi-statement-2014/ 
• The 2015 BTF Research Award will be specifically for a study into hypothyroidism 
• We are in the process of drafting information for GPs and other professionals for the BTF website

General

•  Patients kept informed via our website of changes in supplies in medication 
• BTF Patient literature is being revised, taking into account updated information 
• There is an increase in medical queries; and this raises awareness amongst the medics of matters that concern patients and gaps in diagnosis/treatment 
• We set up a survey via our website to find out how patients have accessed the BTF and what services they would like from the BTF; we have 300 responses to date. The survey is on-going.
• BTF News 78, pp 8-10 featured an article on ‘Challenges of Hypothyroidism’ which you may find useful – interviews with endocrinologists conducted by Judith. 

 I hope all the above information helps with the meeting. There are many strands to our hypo project and we are still in the planning stage, which involves discussion with a wide range of people. As far as GP awareness is concerned we want to raise awareness of all thyroid disorders.

Re the Hashimoto’s search issue on the BTF site, I can see there is a problem with the apostrophe (a ‘\’ appears in the search box) and thus the word cannot be found as the word ‘Hashimoto\’s’ does not exist on the website; similarly ‘Hashimotos’ does not exist. But if you type in ‘Hashimoto’ or ‘hashimoto’ you will get results. I have passed on the apostrophe issue to our webmaster. Thanks for letting me know. "

Here is some Further info on key activities related to the hypothyroid care strategy with approximate dates. a number of them are already mentioned above but the below information came from a different person at BTF head office:

"Hypothyroid Care Strategy activities summary

•  2013 May Meeting with commercial firm about free distribution of targeted info in GP surgeries across UK Poster and simple leaflet design initiated 
• July Meeting with mid-career GPs to gauge their interest in and knowledge of hypothyroidism. They wanted a simple summary preferably issued by NICE and a CPD module. 
• Sep-> Investigation of CPD options for GPs – RCGP too expensive, PULSE already had module reviewed by M Vanderpump. 
• Dec Presentation by VR, JH and JT to BTA annual meeting about proposed hypo strategy – they endorsed targeting of GPs via CPD 2014 
• Jan-> Involvement in writing proposal for large scale clinical research project focused on hypo patients with persistent symptoms – awaiting outcome 
• Feb Lead article in BTF News about hypo strategy Piloting of enquiry forms to capture data about hypo patients 
• April Attendance at BSA seminar in Newcastle on qualitative non-clinical health research 
• May Leaflets finally distributed to GP surgeries initially until end Aug Analysis shows clustering of firm’s boards in W Midlands and Wales – subsequent monitoring show rise in enquiries, especially from these regions. Now extended to Nov. Simon Pearce and Scott Wilkes advising on strategy. 
• Jun-> Commissioning of Dr Tran article for PULSE – M Vanderpump updated module currently now available free 
• Aug Feedback to pharmaceutical company about patient experiences with levothyroxine."

What next? What can I do that will be most powerful?

Thinking about some of the thyroid related things I would like to do once I've stopped running the BTF London Group.

While I need to move on with my life and don't want to be forever harping on about all things thyroid, I still feel passionately that it's important to raise awareness of thyroid disease and things that people can do to help themselves, also to raise standards of care for thyroid patients who are currently not always being treated consistently or well.  And while I salute BTF for all that they do, I feel there is scope for a great deal more to be done and as they are so under resourced and seemingly so slow to get themselves resourced up to do more, well it just seems like there's a glaring gap that needs to be addressed, so maybe I will give myself a project....

Will I:

• Write a book? 
• Pitch articles to magazines and periodicals?
• Pitch talks to groups of medical professionals?
• develop this blog as more of a resource?
• collaborate with a science writer to provide more articles on latest scientific research?
• Seek to influence Mind (the UK's leading mental health charity) to start to provide more information and support for thyroid patients, because they currently don't think it falls within their remit?

Ouch, so many possibilities, I could in fact quite easily spend my entire life on this stuff. And that's not going to happen. So I have some thinking to do and some decisions to make, what to do, what not to do, where to focus.

In the shorter term I am off to the House of Lords next week, to meet with my fellow BTF London Team of volunteers, kindly hosted by our wonderful patron, Lord Borwick of Hawkshead, who is also taking us on a tour of the House which will be exciting.

We will be seeking to find a way to keep the London Group going with me not running it any more. I am excited that nine enthusiastic and wonderful people are coming to that meeting, between them I'm sure they'll find a way to prevent the group from folding. The challenge is that everyone is either not very well, or super busy, or both. But the plan is to try and split the tasks so the load is shared, and perhaps to do things differently in future so that the whole thing can maybe be simplified and become less onerous to do.  

The House of Lords, Westminster

It's a little  ironic, to be going to such a seat of established power as the House of Lords and at the same time trying to decide what subsequent action I can take that will be most powerful in the face of what seems like an overwhelming challenge - how to make things better for hard to treat thyroid patients in this country.  I hope that this meeting can be a catalyst for meaningful change, somehow, someway. It signifies me moving forward powerfully into the world. Giving up the admin headache of running the group and freeing myself up to do something bigger.

Of course I may decide to leave thyroid things alone for a bit. I have a lot of other things going on in my life. Very many competing priorities. I may decide to focus on something else entirely. Perhaps my letting go of the group is also time to let go of the wider challenge and trust that other people are going to be able to bring about the changes that need to happen.  The BTF Hypothyroid Care Strategy Project is underway now after all, and I was one of the people who pushed for that to begin.

One of the many wonderful friends that I have connected with on this journey now seems to have entirely moved on and is pioneering an important campaign for muslim feminists. Her example inspires me. I feel I need some space to think and breath and the answer, to the question of what I want to do next, will come to me.

Hope

Thyroid Patient Voices, Feb 2014, London event write up

Most of the attendees at the Feb 2014, BTF London Group meeting
thanks to Darren Holman for taking this picture

Thirty of us attended the British Thyroid Foundation Patients Voices meeting at the Royal Free in Hampstead this weekend.  It was amazing, as these meetings always are. Sadly it may be my last one. I told BTF in January that I will be standing down as London Coordinator after this meeting and since then I’ve been trying to arrange for another coordinator to carry it on. Though there are lots of other London volunteers now, who have got involved in the group since it was set up, no one else has thus far said they feel confident to take over running things.  And I’m not surprised, it’s a lot of work, which is why I’m standing down.  I’ve been doing it for three years now and it’s time to move on. I’ll continue with this blog and if the London Group continues I expect I’ll continue to have some involvement and I certainly anticipate staying in touch with the many wonderful friends I’ve made. I hope there may be other ways I can support BTF. But enough is enough.  Being a local coordinator, especially for our capital city, well it’s a big job. I can’t continue to justify the amount of my time it takes.

I’ll be meeting soon with the other London based volunteers to see what we can come up with in terms of a plan for the future.  Watch this space for updates. At the moment we have dates in the diary with the Royal Free for future meetings to take place in May, Sept and November (details on BTF website) so I do hope those meetings will go ahead. Time will tell.

On Saturday everyone had a chance to say a bit about themselves and their journey with thyroid disease to date. Some were newly diagnosed and slightly anxious, seeking information, what to expect and what could they do to help themselves. Some had been ill a long time and had some bad experiences but were now at a point when they were relatively well, a couple were very disillusioned with the medical profession but most, it seemed to me, had found doctors they could work with, who were supportive, even though they may also have had some previously who were not very good. Some people there were really struggling. I think we all found it helpful to be together and share our experiences.

Judith Taylor, chair of trustees for BTF and also the editor of the BTF newsletter and thyroid cancer booklet etc, so a very knowledgeable lady, who told her personal story at one of our previous meetings, came along, which was great. Although we didn’t have an expert speaker for this event it was good to be able to refer some questions to Judith who knows so much.  

We like the Patients Voices events as much as the Information Events, it’s good just to be able to talk to each other.

The key issues that came out of our first group discussion and were identified as subjects for further exploration, in smaller groups after the break, were:

1.     Managing symptoms (lifestyle and diet, etc)

2.     Getting the most out of our doctors

3.     Psychological Wellbeing

4.     Having a Career with Thyroid Disease 

Each group then fed back their key insights and issues to the group as a whole.

One interesting action point that came out was a suggestion to BTF to develop a leaflet for employers to help them understand thyroid disease and how they can support employees with a thyroid disorder. One of the attendees is an employment lawyer who deals with disability law and she and Judith are going to take this idea forward which I think is a great initiative and many members welcomed the idea enthusiastically.

It was also interesting to note that many attendees had quite high powered jobs, as I did too, once upon a time.  Hence the discussion group we created about having a career with thyroid disease – this was a major concern for many of us who felt our capacities to perform somewhat diminished and find ourselves sometimes struggling to manage our work lives. I worry often about the millions of thyroid patients who are perhaps less naturally dynamic than this self selected and very proactive group who have all sought and found help for ourselves – and yet are still often in difficulties. I do feel the NHS – or someone - should be doing more to provide these sorts of groups more proactively to a wider group.  I would love to be making this happen but I have to draw a line under how much of myself I am prepared to give.

The comment I kept hearing – and I could identify with, particularly harking back to when I was very unwell -  was “I’m so glad to hear I am not the only one having X or Y or Z experience/symptom and now I know I’m not going mad!”  Being able to meet and chat with other thyroid patients was just wonderful, as it always is.

Everyone really enjoyed the discussion groups. It would have been good to have had more time, but running an event like this is tiring so I have always limited them to half a day and I think that’s been the right thing to do, for my own and the other volunteers’ wellbeing.

Anyway. I’m happy that we had another good event. Thanks to all who came, particularly those who helped make it happen.   Who knows what will happen next with this group. Hopefully we can find a way for it to continue.

Patient Voices on Managing Symptoms, May 2013

An earlier post introduced the Patients Voices meeting we held in London on 11th May 2013. This post shares the notes from the breakout discussion group which looked at managing symptoms. 

With many thanks to Group member, Hannah Elbourne, who has kindly typed these up and who also kindly took several lovely photos of this event.

NB: These notes must not be interpreted as medical advice, they are simply things that individuals have tried and found helpful to them if you are experiencing any symptoms which cause you concern - speak to your doctor. 

BTF London volunteer, Theresa, with the Expert Patient Programme course book:
 Self  Management of Long Term Health Conditions

Managing Symptoms, Discussion Group Notes:

Everyone in the group explained a bit about who they are and why they have chosen this particular group to participate in. We went on to talk in general about coping with having a chronic illness as well as discussing our perspectives and questions we had on how to spot and manage the emotional, mental, and physical symptoms related to thyroid disease.

Everyone in the group was hypo rather than hyper, so this is what we focused on, although it was acknowledged that hyper and hypo symptoms can be quite similar and difficult to detangle - and also that symptoms can vary from person to person and may not always be down to our thyroid condition as we may also have other things wrong with us. 

There were some approaches that came up which people felt help them in general, and also techniques for coping with specific symptoms.

  

Common symptoms and things people in the group said help them:

Muscle pain/ swelling: especially lack of upper limb strength makes it difficult even doing simple exercises that use arms or puts pressure on shoulders:

•         Magnesium spray on the muscles
•         Not eating salty foods
•         Seeing an osteopath
•         Massage therapy (human contact) – one person goes for a massage and talks through it so it’s like a two in one therapy session!

 Difficulty sleeping/ insomnia: really need sleep to be able to function (more than before having thyroid issues) but find it much harder to get off to sleep, plus wake up a lot more during the night:

•         Don’t exercise too late as the body should be winding down, not up
•         Switch off computer/ electronics
•         Don’t eat too late
•         Try to be in bed early and at the same time each evening

 Immune system issues: we all seem to catch more colds and viruses and they seem worse and take a long time to recover from making life difficult:

•         Olive leaf tea
•         Echinacea drops
•         Vitamin C as it helps to strengthen the immune system
•         We discussed supplementing separately instead of all in one multivitamins and researching to find the right products
•         Flu jab – this helps one participant but made another feel very unwell
•         Avoid people with colds like the plague!

 Body temperature: not being able to regulate our temperature, either too cold or hot, and not being able to cope with being in the sun:

•         Exercise helps to regulate temps
•         Wearing layers

 Hair thinning/ falling out: this can be very upsetting for people:

•         Coconut oil to help dryness
•         Trichologist, but expensive
•         Not to get upset about changes in appearance, there is more to you

 Fatigue: both physical and mental fatigue can make us feel isolated, disconnected and depressed and stops people from being able to live their lives:

•         Learning to say no and not take too much on is difficult but important
•         75% rule – trying not to use all your energy each day, even on good days when you might want to do lots – factor in rest each day
•         Being gentle on yourself and not beating yourself up when you can’t do so much
•         Coming to terms with the changes and understanding your new boundaries

 Anxiety: as with fatigue this can make us feel isolated and inhibit our lives and affect our self-esteem.

•         Deep breathing and yoga breathing techniques
•         Gentle yoga practice and other gentle exercise such as Thai Chi and walking  
•         Meditation
•         Being around nice, genuine, caring people helps!

 The above coping techniques for fatigue and anxiety crossed over a lot and came up a lot with helping to manage thyroid symptoms and a chronic illness in general.

Nutrition is also big factor in taking control and managing ourselves but although there are some general points that seem to work for a lot of people, such as going gluten free sometimes helping with brain fog and fatigue, or vitamin D and Iron levels needing to be optimal for thyroid to function well, it is all very confusing. We touched on this briefly but there is a lot of conflicting information especially as what works for a person with underactive thyroid doesn’t necessarily work for someone with an overactive thyroid, or autoimmune thyroid, or for people who do not have a thyroid! [note from Lorraine - we are continuing to seek more information on this subject for group members and will have speakers from the University of Surrey Msc in Nutritional Medicine giving talks in November 2013]

We have all had to make life changes and have to keep adjusting. The changes in ourselves, our personalities and our constantly changing boundaries are a struggle to understand and to cope with, not only for ourselves but also for the people around us.

Support from others is a very important factor for our wellbeing but it is very difficult for others to understand how debilitating this illness can be because:

•         Symptoms can be so variable
•         It is seen as an easily treated illness
•         So many symptoms are similar to what people think they can relate to when they are actually very different i.e. thyroid fatigue is very different from just being tired, or brain fog is not the same as having a lack of focus.

It would be useful to build a template for how to explain our symptoms and the things we go through that others don’t see (‘walk in our shoes’)

We also talked about how it can be difficult to spot thyroid symptoms as they can be similar/ confused with many other things, for example problems such as fatigue, depression, and anxiety may or may not necessarily be because of the thyroid and could be an indicator for something else. So being around other people with a similar illness can really help with recognition and understanding of what is happening to us, and although each person is different there is still a lot of common ground.

I’d like to add and I think others agree that the events at the Royal Free are very emotional (in a good way!) and informative, it makes such a huge difference to be around fellow thyroid patients as it can be such an isolating illness and being able to chat with people in a supportive environment is a great relief and really helps me to feel less disconnected from people in general. Thank you!

Other things that were mentioned in breakout group:

• Heart palpitations – we did talk about this with anxiety but I think although they can be connected, palpitations are also a separate issue on their own.
• Not a cure but how to cope for now
• Variability of symptoms limits you
• Alcohol seems to disagree with us
• Blood tests don’t necessarily show how you feel

 Other things that were mentioned, but maybe in wider group

• Time of day for taking thyroid medication vis-à-vis other pills 
• Reducing carbs, esp sugar
• Keep book of successes
• Not the same person as pre-illness

Patient led workshops, how we did it....

We held a meeting at the Royal Free in Hampstead on 11th May 2013. We called it Patients Voices and we had about 35 thyroid patients attending, with a range of thyroid conditions and varying levels of experience and knowledge about them. Most were London based but others travelled from as far afield as the Lake District and Liverpool.

some of the volunteers (patients and friends) who made this event happen:
clockwise from top left: Theresa, Lorraine, Claire and Karen

We now have an excellent format for these kinds of meetings which you are welcome to copy if you want to do something similar yourself. Here is the programme:

British Thyroid Foundation support meeting, 11^th May 2013 

10am – Registration and refreshments 

10:05 – Introductions – Who are we with thyroid disease?
·       Everyone is invited to sit together in a circle and share: our names, how we found out about this event and what we are hoping to talk about today, those who wish to can also share what thyroid condition we may have and how we are feeling today.    

11:15 – Relaxation session – those who wish to are invited to participate in a short guided meditation before the break. 

11:20 – Announcements 

11:25 – Break, refreshments will be served and you are invited to choose a breakout discussion group to join after the break 

11:50 – Discussion groups – we will break into smaller groups to explore those issues which have been identified as being of most interest. Eg: Psychological Wellbeing, Getting the most out of our doctors / Managing symptoms...Questions for future speaker topics etc.   

12:40– 1pm The groups will feed back on the key things they discussed and any actions they have agreed which they’d like to share with everyone, for inclusion in a report for the British Thyroid Foundation website and Lorraine’s blog.

1pm – close   

In the first session we identified several common themes that were of interest to most of us and so the discussion groups after the break were as follows:

• Diet and Lifestyle
• Psychological Wellbeing
• T3 - what's it all about? And how do we access reliable health information?
• How to get the most out of our doctors
• Spotting and managing Symptoms

We used volunteer facilitators from within the group who had appropriate skills and had agreed in advance to lead the break out discussions.

Each discussion was lively and fruitful. I will be sharing the notes from each of them in posts to follow.

Patients Voices on Psychological Wellbeing discussion notes are now here.

Patients Voices on Managing Symptoms due to go live shortly:

Comments welcome and please share these posts with anyone you think might find them helpful, whether they are a patient or a healthcare professional.

Deciding what to share - a drive to be more open #nhbpm #4

The #nhbpm prompt for this post is "Disclosure" 

...hence masked ball photo, yes it's me... 

I started this blog anonymously. I felt very anxious about the idea of anyone who knows me in "real life" seeing me revealing my vulnerabilities and fears about my illness. I was particularly concerned about this from a professional point of view. I felt that my thyroid condition and my career had to be kept strictly separate.

I "came out" in Jan 2011 with a post entitled "Adventures in Social Media and Who am I Anyway". I think doing that was part of a process of acceptance and coming to terms with the fact that my illness is not something I need be ashamed of, it's just something that has happened to me and that by communicating openly and honestly about it I can help myself navigate the experience and feel better - and potentially also help others.

The truth sets us free.

So these days I am pretty open. You know my name and what I look like. I even shared a couple of most unflattering pictures of me looking extremely sickly on one of my earlier posts this month. Pictures I would previously have hidden and felt a bit embarrassed even to have.  I took them in an effort to see how ill or well I looked. They are a strange little archive, covering a few months of my life when my world was being rocked and I felt very insecure. I would peer at myself down the camera phone lense and then peer at the picture and wonder what the image meant. I have considered doing a post which is made up of all those sad little faces, but I haven't done it as I'd worry what such a post might say about me!

So what do I disclose now - and what do I keep hidden?

I don't blog about my relationship, except to say how adorable my adorable husband is, which he is.

I don't say much about my work, I have never mentioned an employer or client by name.

I keep my Facebook separate, that's a play space for me and I tend not to connect my blog or most of my social media friends (there are a few very special exceptions to this, you know who you are).

Likewise my Linked-in is purely for career networking.

I am vague about my precise location. Safety first.

I don't name my doctors.

I don't name anyone else by name without their permission.

Interestingly, having become a health advocate through the illness and my voluntary work with the British Thyroid Foundation I am starting to consider possible related employment opportunities and in those cases I find I'm showing the blog to potential employers, which may or may not be a good idea but it's a decision I've taken and we'll see where it leads me. Certainly it's not something I'd have done a year ago. Now I feel a profound sense of the value of my experiences of chronic illness and my ability to write about them. I'm driven to being more open. It feels important.

What do you think about how much I share, too much, too little or about the right amount? Have you written about this subject too? I'm so interested in what other health bloggers and readers think about this. Comments as ever are positively encouraged. :)

with light and love

Lorraine

Expert Patient Programme

Ahem, it has been some time since my last post. I guess I needed a break after our big meeting. I still have so much to say about that and will come back to it. I’ll share some photos that I now have, in a separate post. The video footage is with a friend of mine being prepared to be put online: I am pretty confident this is going to happen now, each step is slowly falling into place, bit by little bit. Hopefully it will be worth waiting for. J

I’ve had a couple of emails about the event as well which I haven’t yet responded to – if you are one of the people who’s been in touch and not heard back from me, please accept my apologies, I will get on the case in the next few days.

One of the things that was really interesting about our meeting was learning about the Expert Patients Programme (EPP)

EPP offer courses for people with chronic health conditions, to help them manage their conditions and get the most out of their doctors. At our event it was very clear that having a productive relationship with their doctor is one of the things many of us find most difficult and that most of us are keen to be proactive and positive about our situations.

 I had a follow up meeting the other day with Nurcan Cahill from the Programme, along with one of my fellow BTF London Team members who had invited them along to our event in the first place. Lots of us were really keen to do an EPP course together. But it turns out availability is extremely limited.

These courses are free but only available in areas where the Primary Care Trust (PCT) has commissioned EPP to deliver them. Hmmm, I am super lucky because I live in Camden and courses are available here I’m doing one starting on 25^th May, contact EPP if you are local and would also like to take part. But can you believe, Camden is the ONLY London PCT that has commissioned EPP!! I was so shocked and disappointed for people living outside the area who will not be able to participate.

These courses have been proven to improve quality of life for people with chronic health issues - and reduce demands on primary healthcare resources. Why on earth isn’t every PCT in the country using them? Seriously, it’s a scandal. And that’s not a word I use lightly.

However anyone can buy the course book, it looks like you can pick it up very cheaply on Amazon, so that’s an option if you’re interested in knowing more about the EPP approach and you don’t live near me. I am reading it now and am impressed with it so far. Reading the first 3 chapters today I have created a little action plan to achieve my goal of losing a little weight, which I would dearly like to do. I am going to go out every other day and run for 5 minutes (all I’m fit for at the moment), then stretch for ten minutes afterwards and I am going to avoid sugar every other day too (I haven’t got the strength of will to avoid it completely right now though I hope that will change, I am so hooked on chocolate it’s not funny).

I did a little run earlier. Five minutes seems a ridiculously short amount of time to exercise but honestly I felt like I’d done an hour long workout! Stretching out afterwards on my yoga mat and doing some very gentle yoga-ish/pilates-like exercises, I felt very virtuous and could feel I’d got my heart pumping nicely. It’s enough for me right now and definitely did me some good. My challenge is not to do too much because I am ridiculously driven. But hopefully I can regain some fitness and maybe even drop a dress size in time for my cousin’s wedding next month, by adhering to my plan.

I’ll let you know how I get on when I do the actual course too. Or maybe I’ll see you there!

I’d love to hear from anyone who’s done anything like this before, or to know what you think of the idea. Please leave me a comment  if you’d like to, it’s great to know people are reading - and to connect. J

Click here for Contact details for Expert Patient Programme