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HMSA are helping to recruit Dad’s to a new study in Glasgow.

Posted By HMSA Social Media Coordinator, November 29, 2018
Chronic, or long-term pain is a symptom of many illnesses and affects a significant number of children and adolescents. Chronic pain is pain that lasts for longer than six months and can be felt as varying intensities either all of the time, or can come and go at different times. Dr Joanna McParland, the study leader at Glasgow Caledonian University, is interested in the beliefs that parents have about their child’s pain condition and what they might think is unfair about this experience.
It is important to understand parental experience because as I am sure you know, pain can not only affect the person who has pain but also those who care for them, particularly parents. We have so far spoken to mothers and learned valuable information about their experiences. Feedback suggests they found discussing their experiences useful and benefitted from hearing about the experience of others. We now invite fathers or stepfathers (both referred to here as ‘father’) to participate in our study to understand their experience of living with a child who has chronic pain. This is important because the view of the father is as valuable as that of the mother and can differ from the mother’s view, yet fathers are often underrepresented in research.
As the father of a child with chronic pain, you are invited to participate in this study. Your participation in the study would remain confidential to the research team at Glasgow Caledonian University. For more information please visit http://www.gcu.ac.uk/fatherstudy and for twitter the link is https://twitter.com/WisemanKirsty/status/1064508960387014656 .

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Posted By HMSA Social Media Coordinator,

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Cannabis-based products, chronic pain, and hypermobility-related disorders

Posted By Donna Wicks, November 14, 2018

                      

Statement from The HMSA, the Ehlers-Danlos Support UK, and The Ehlers-Danlos Society regarding changes in the law in the United Kingdom

12th November 2018

This statement is for people with chronic pain and hypermobility disorders such as hypermobility spectrum disorder and Ehlers-Danlos syndrome. It is for people in the UK, or non-UK patients being treated by doctors in the UK.

As of the 1st November 2018 the UK Government has changed the law such that doctors can prescribe cannabis-based medicines.

However, the doctor must be a specialist consultant, and the conditions for which these medicines might be used at present are multiple sclerosis; epilepsy; and nausea and vomiting caused by chemotherapy. Even then it must be that all other treatments have been tried first, and the risks and benefits considered carefully.

Currently there are no licensed cannabis-based medicines for chronic pain in the UK. This may change in the coming years with new drugs, or there may in the future be guidance from the National Institute for Health and Clinical Excellence (NICE) and other organisations that would allow pain specialist doctors to prescribe such medication.

For now, we are advising our members that they should not expect that their doctor in the UK will be able to prescribe a cannabis-based treatment for chronic pain or muscle spasm for hypermobility-related conditions, or any form of chronic widespread pain such as fibromyalgia.

We will support research and guideline development where we are able to; and, monitor the situation and advise our members as this changes.

If you would like to read more about the change in the UK law and the Department of Health and Social Care’s position on this you may find the letters referenced below a helpful start. These letters have been published by the Chief Medical Officer, National Medical Director, and Chief Pharmaceutical Officer of NHS England; and, The Chief Medical Officer for Scotland.

Donna Wicks, Chief Executive Officer, and Dr Philip Bull, Medical Adviser and Trustee, HMSA

Kay Julier, Managing Director, and Dr Hanadi Kazkaz Chief Medical Officer, Ehlers-Danlos Support UK, and

Lara Bloom, International Executive Director, and Dr Alan Hakim, Dir. Of Education, The Ehlers-Danlos Society

 

References

Cannabis-based products for medicinal use. Department of Health and Social Care, Gateway Publications clearance 08539, 31st October 2018

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/753444/

Cannabis-based products for medicinal use. The Scottish Government, 31st October 2018

https://www.sehd.scot.nhs.uk/cmo/CMO(2018)15.pdf

 

 

 

 

Pain Management blog by Hope Simpson – Youth Reporter

Posted By HMSA Social Media Coordinator, August 28, 2018

Pain management

 

Pain has been an unfortunate factor in my life now for many years, in many forms and I know this is a common symptom of any chronic illness, yet one that can sometimes be the hardest and most complicated to treat. The first step for me when I’m particularly struggling with pain, of any kind, is to try and figure out where the root of the discomfort is coming from. Have I been doing too much (exercise, physio or even typing work with my hands) do I have a cold or virus that could be contributing, has the weather temperature drastically changed? All of these help me figure out what I can do indirectly to help my aches, resting, not using my hands and wrists as much as I can and making sure I’m regulating my temperature. My symptoms do get much worse in the middle of summer and winter due to the rapid changes and extreme heat and cold. Once I’ve done this I can move on to “stage two” of my pain management and more directly tackle the problem.

 

A time when I struggled tremendously with pain was during my GCSE exams last year, while I had many supports in place and was sitting them at home with extra time I still found this a huge strain on my body and had to search around for as many remedies as I could, to get me through. I did type all my exams which was much better than writing, something I never could have managed to do, however this still put a lot of strain on my wrists and hands which led to frequent subluxations and discomfort. To combat this my physio suggested splints for my wrists while typing as this would prevent them from having to work so hard, she also had the idea of positioning a pillow under my arms so I didn’t have to hold them up on my own. This made a huge difference and if I’m having a particularly bad pain day now it’s something I still use. Hot/cold packs have been and still are one of the best inventions for dealing with pain! Simple but effective and something you can just keep in the freezer/pop in the microwave and have them ready when you need them. They’re also great to help warm you up/cool you down and are especially amazing in the summer and winter months during the more extreme temperatures. Having a hot bath can also help in the cold, I’ve started making and using little bath salts which while may not provide much relief (too soon to tell) but definitely smell good and are always prefect to pamper yourself with on a particularly tough day. Finally on my list, a TENS machine, it’s something that while, not for everyone, has helped me a lot with lower back and hip pain. As I’m not the most scientific I’ll attempt to explain it in my own words, for me it’s like a steady pulsing sensation coming through little pads attached to your skin near the affected area. It provides distraction and something other than the pain to focus on, I tend to use it while watching a favourite film to help distract, which indecently brings me to my next point.

 

Distraction is the biggest one for me, something I used back when struggling with CRPS (complex regional pain syndrome) over five and half years ago and that I have used to combat pain connected to other illnesses ever since. Watching a film, talking to a friend, using a TENS machine, music, stroking my dog, working on a project, these are all ways to distract my mind away from the intense pain and into living my life. They don’t always work and for extreme pain attacks I mostly have to just breathe until it’s over, but day-to-day finding the things that take your mind away can be a help.

 

My final point within this piece is to highlight the fact that all pain is valid and should be treated as such, it isn’t a competition of who suffers the most but rather, what we can do to help one another in our individual journeys. You should never feel as if your being “overdramatic” pain is pain and at the end of the day no one should have to deal with it, but we do and so we find ways of easing it, for ourselves but most importantly for others.

 

Congratulating Dr Alan Hakim on his appointment as Director of Education with the Ehlers Danlos Society

Posted By HMSA Social Media Coordinator, August 2, 2018

We would like to congratulate Dr Alan Hakim on his appointment as Director of Education with the Ehlers Danlos Society. This will benefit the hypermobile community greatly as he works to improve expertise among medical professionals worldwide. This new role means that Alan will have to step down as our Trustee and Chief Medical Advisor but we are very pleased that he will continue as one of our medical advisers. Dr Philip Bull replaces Alan on the Board of Trustees.

We would like to say a big thank you to Alan for his work with the HMSA so far over the last 15 years. We all know  that Alan is always supportive and incredibly positive. He is largely responsible for the HMSA’s excellent website and wrote the majority of the medical content, keeping it up to date, enabling the HMSA team to achieve Information Standard accreditation. Alan has supported the development of our ongoing professional teaching programme with Donna Wicks (CEO) and her excellent team, and has helped to ensure that we lead the way in running programmes such as the residential weekends for patients and information days.

He has championed the positive ethos of the Charity, with the need for people to be given the skills of self management and to be able to work with their medical and health professional as informed partners.

The Charity now has an international reputation for it’s work and Alan worked hard within the team to ensure this outcome was achieved.

This new appointment as Education Lead with the ED Society will allow many more health professionals to be reached and will be of mutual benefit to the Charities as we move forward in synergy.

Please join us in sending Alan our best wishes with the new appointment, and thanking him for his ongoing support and input into the HMSA.

Rob Smith Chairman

Donna Wicks CEO

Dr.Philip Bull Trustee and Medical Adviser

Hannah Ensor, Trustee


Disclaimer
The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.
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