Letter of support petitions CIC.docx
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20/02/2015 Urgent - The Cross Party Group on Chronic Pain discusses the Centre for Integrative Care"The NHS Centre of Integrative Care will be on the agenda of the Cross Party group on Chronic Pain on Tuesday 24th February. As 95% of the patients attending the NHS Centre of Integrative Care have long-term chronic pain issues and pain services are currently totally overwhelmed then they could not possibly cope with any extra influx of patients should services at this hospital reduce or possibly cease. Dorothy-Grace Elder is the honorary secretary of this group and is coordinating written responses and messages of support to the group
email@example.com. We know that not everyone can attend the group in person but please do send written responses with your views & experiences to the various agenda items below & if possible also please contact your constituency MSP and regional MSPs forwarding them a copy of the agenda below and urging them to attend the meeting in person or for the MSPs to send messages of support if they cannot personally attend on the evening & to help show their support this hospital & their patients. The NHS Centre of Integrative Care remains in danger of further services being cut or to cease altogether so please do all you can to help to keep this hospital open & adequately funded for patients in the future. We are asking for a moratorium and to secure this hospitals future for national funding for the hospital, to take the funding away from Health Boards, and to hopefully allow self-referrals to get around the GPs refusing to refer patients. We also hope to address the issue of GPs refusing to prescribe homoeopathic remedies since the hospital pharmacy closed & patients now having to pay privately for their prescription only if they can afford it, however everyone is supposed to get free prescriptions in Scotland. We hope that we can rely on your support and assistance & to forward to others who are interested."Have a look at the Agenda here and please let your views be known.
6/02/2015 New Series of 'Airing Pain'
The digital radio programme for people living with Chronic Pain'Airing Pain' is the digital radio show brought to you by Pain Concern, a charity focusing on raising awareness about pain and the varying approaches to pain management available. This week's episode is focussing on Interventional Management and some of the more invasive pain management methods. You can listen live every Sunday and Tuesday at 8pm on Able Radio or download episodes from Pain Concern. Make sure to check out their catalogue of episodes as many interesting topics have been covered with experts and sufferers both taking part.
05/02/2015 Fibroduck Lights up Blackpool Tower!
For this year's Worldwide Fibromyalgia and ME Awareness Day, on the 12th May, Blackpool Tower will be illuminated with the Fibroduck colours. The tower will be coloured purple and the heart blue with the Fibroduck logo running through the heart. The team at Fibroduck are delighted they can share awareness of Fibromyalgia in such a dramatic and bright way!
05/02/2015 Glasgow Disability Alliance's Spring 2015 Learning Bulletin
Check out the GDA's new learning bulletin here. Classes and events include Healthy Eating and Gentle Exercise and The History and Archaeology of Glasgow, an accessible all ages tour of Glasgow discovering its history and exploring its iconic buildings.
30/01/2015 Marin D'Or - Healing Spa and Medical Centre
As most of us know one of the most effective treatments for the symptoms of Fibromyalgia is light underwater exercise and and sea water spa treatment. Marina D'Or is one of Europe's premier sea water spas offering a range of treatments. Maybe your next holiday could be a time for relaxation and treatment? Have a look at all Marin D'Or has to offer here.
30/01/2015 The ALLIANCE Launch Three New Websites
January has seen the launch of three new websites developed and managed by the ALLIANCE for some of their currently ongoing projects.
The Health and Social Care Academy’s website will promote new developments in health and social care and help share thought provoking content, innovative ideas and change.
The People Powered Health and Wellbeing website showcases a range of useful resources about co-production and person centred care, including reports, videos, news and events.
The Self Management Network Scotland website offers the opportunity to 'join the conversation' about Self Management, share your experiences and hear about innovative approaches from across the country.
30/01/2015 Dr. Teitelbaum's Vitality 101 - Eliminating Unnecessary Medications
Dr. Teitelbaum, a Fibromyalgia expert and fellow sufferer, discuses the importance of cutting out unnecessary medications in his recent Vitality 101 web post. The issues of opioid based painkillers, the other options available and how to asses your medication intake are all discussed here at Dr. T's website.
03/12/2014 Derby University - Pain Medication Survey
FMAUK have informed us about a Pain Medication Study being carried out by Derby University. To take part in the survey all you need to do is fill out the questionnaire which can be found here. Participants will be given the opportunity to be entered into a draw for a £20 Amazon gift voucher and participants who take part in the 3 month follow up questionnaire can enter the draw for a £50 Amazon voucher (Please note that you will have to be contactable by email to be entered in to the draw).
The study will collect valuable data on the use of painkillers in the UK and will hopefully aid in the further understanding of pain control for those living with Fibromyalgia.
19/11/2014 Fibroduck's New Mobile App Now Released!
The Fibroduck mobile App has arrived, and what's more for a limited time its free. The new App is jam packed with features and works across all platforms.
The App has a number of handy functions for the Fibromyalgia sufferer including: Personal Notes, a space for a to-do list or diary; Personal Medication, a place to save those tongue twister medication names; Fibrowall, a chat facility within the App; Fibromyalgia Awareness, a handy in depth explanation of Fibromyalgia that can be shown to others on your phone when you're struggling to find the right words to explain Fibromyalgia, and many more useful functions.
Download the App from the Google Play Store or the Apple App Store and be sure to leave feedback so the folks at the Fibroduck Foundation can continue to develop effective tools to support Fibromyalgia sufferers.
19/11/2014 - Interesting News from Dr. Teitelbaum
From Dr. Teitelbaum's newsletter:
"A new study from Stanford University School of Medicine adds an important piece to the CFS puzzle — a possible physical diagnosis for CFS. The study, published in the journal Radiology, showed that a particular combination of three brain scans revealed changes in the "white matter" of the brain. This reflects changes in the nerves carrying information, predominantly focused in the right brain arcuate fasciculus, which connects the frontal and temporal lobes (a connection especially important in speech and word recognition). Cognitive dysfunction, often called "brain fog" is a key part of CFS and its painful cousin fibromyalgia. It does not result in a loss of intelligence, but rather the "brain fog" usually seen in CFS reflects more as difficulty with word finding and substitution and short-term memory. Interestingly, the current study shows evidence for nerve tract changes in the part of the brain involved in word finding and interpretation, confirming and helping us better understand what is being seen clinically."
Read more about the research findings and Dr. Teitelbaum's analysis on his website here.
19/11/2014 - Fibroduck Trademark
Fibroduck have released a statement concerning their decision to trademark the Fibroduck."We've been concerned for some time that groups and individuals not associated with The Fibroduck Foundation have been selling yellow plastic ducks and calling them 'fibroducks'. A lot of people have bought them in good faith, thinking that the proceeds were coming to us - The Fibroduck Foundation - to fund biomedical research into fibromyalgia, when the funds are actually going elsewhere. In order to protect all the hard work we have put in, we have now registered Fibroduck as a Trade Mark, and this legal protection took effect on the 31st October 2014."
Hopefully this development will allow Fibroduck to continue their good work funding biomedical research to find a cause, a test and a cure for Fibromyalgia.
13/11/2014 - 2014-2015 Global Year Against Neuropathic Pain Sponsored by the The International Association for the Study of Pain (IASP)
The Global Year Against Pain is a yearlong initiative designed to raise international awareness of different types of pain and this year the campaign's focus is on Neuropathic pain. Check out IASP's fact sheets on Neuropathic pain and the campaign here.
15/10/2014 - NHS Lanarkshire Review of Services Provided by The Centre for Integrative Care
NHS Lanarkshire have published their review into the services provided by the CIC (formerly known as the Glasgow Homoeopathic Hospital) after carrying out a consultation earlier this year.
In general the findings show that though there is some difference of opinion on the efficacy of Homoeopathic treatments amongst the general public, users of the services at the CIC overwhelmingly have responded Yes to the question "Should NHS Lanarkshire refer patients to the Centre for Integrative Care (Glasgow Homoeopathic Hospital)?".
Check out the findings of the report plus a Q&A on the review and consultation here.
26/09/2014 Next Support Group Meeting Friday 10th October
Dr. Joanna McParland will be joining the group at our next meeting to discuss a project she is working on regarding individuals with chronic pain who are in employment. If you feel your experiences would be relevant please come along to the meeting and talk with Dr. McParland.For any members who would not be applicable for the discussion with Dr. McParland please still come to the meeting as we will have our usual group wide chat as well as a focus on raising awareness of our published Fibromyalgia books.
26/09/2014 - Support Group Meeting of 12th September with Catriona Gibson from WhiteCat Herbal
The group had a great session with Catriona Gibson at our last Support Group Meeting discussing Herbal Remedies and ways we can all incorporate such treatments into our lives. Catriona brought along a few tinctures to try and discussed the benefits of the herbs all around us.
10/09/2014 - Fibromyalgia Awareness Petition
Even though millions of people suffer from fibromyalgia, the government does very little to acknowledge this illness or invest in finding a cure.Diane Bradley has fibromyalgia and started a petition to the government demanding more funding for a cure. She needs 100,000 signatures to get the House of Commons to consider her petition.Please sign the petition, which can be found here, and please share this with your friends and family or anyone else who would be interested. Together we can bring change!
10/09/2014 - Waverley Paddle Steamer Day Trip Photos are up!
In August this year the group had another enjoyable outing on the Waverley Paddle Steamer. Have a look at the photos here in our gallery.
We hope that everyone enjoyed themselves and benefited from the community spirit and togetherness of the day. Although Fibromyalgia Friends Scotland is a small charitable organisation the Scottish Executive Health Dept. subsidised the cost of the trip so the day could be enjoyed by all. Please remember we are always grateful for any donations we receive.
05/09/2014 - Fibromyalgia Magazine September Issue Fibromyalgia's monthly newsletter is out now. This month's issue details the UK FM Awareness week as well as numerous articles on Fibromyalgia and living with the condition. Some highlights are:
03/09/2014 - Dr. Teitelbaum Enjoy Your Vices Round 37 - The Salt Controversy
The latest email newsletter from Dr. Teitelbaum discusses guidelines on salt intake and what this means for Fibromyalgia sufferers. Dr. Teitelbaum notes:
"Three new studies came out this week shedding more light on the salt controversy. As we've noted for many years, the current fad of salt restriction is ill advised.
Unless there is good reason to do so, salt restriction is a bad idea. This is especially so in people with fibromyalgia, adrenal fatigue and/or autonomic dysfunction (POTS, NMH), where salt restriction will cause you to crash and burn. So my recommendation? Get a good quality sea salt, such as Celtic Sea Salt or even the pink sea salt grinders at Costco, and let your taste buds be your guide."
Read more here.
01/09/2014 - Pain Concern E-Petition
Jean Gaffin, Pain UK’s Pain Champion for 2013, has started an online petition calling for the UK Department of Health, along with organisations responsible for setting standards of care, to improve the way people in pain are treated. Pain Concern are promoting the e-petition to push for a raise in awareness of chronic pain and to introduce measures to ensure GPs are questioning patients on they pain they experience on a routine basis.
Although the e-petition is looking to ask a question in Parliament regarding the NHS in England, members of Fibro Friends Scotland may want to sign their name to help the drive toward proper recognition of chronic pain conditions.
Sign the e-petition here.
08/08/2014 - Pain Concern Carer Community
Pain Concern has set up a Pain Concern Carer Community forum for young carers aged 16-25 caring for someone with chronic pain. Pain Concern Carer Community is a forum for young carers across the UK to discuss, share information, and keep up with news in the pain community. The Carer Community aims to provide an online space where young people can keep in touch with each other and share their experiences of coping with illness in their social or familiar circles. By doing this, they can support each other and improve the quality of their and someone else’s life.
05/08/2014 - Pain Matters Issue 59
A new issue of Pain Concern's Pain Matters magazine is out now. In this issue a look at Paracetamol; the pros and cons, and a look at how long term health conditions can affect the relationships in our lives. Consult Pain Concern to order your copy.
05/08/2014 - Fibromyalgia Association UK National Awareness Week 6th-14th September
FMA UK are promoting this years National Awareness Week for the 6th-14th September. This is a time for all of us to share our experiences living with FM or with FM sufferers.
01/08/2014 - Update Disability Information Scotland
Update exists to provide an up to date database of the resources and support available to individuals living with a disability. Check out the Scottish Disability Directory and see if there are any services you would benefit from.
August Newsletter - Fibromyalgia Magazine
Fibromyalgia magazine's monthly newsletter is out now. Its full of informative articles and interesting pieces for people trying their condition. Click on the link for the full list and here are some examples:
Airing Pain Episode 62The new episode of the Airing Pain podcast focuses independent living. Looking at help for those with chronic pain to live independently; the Lothian Centre for Inclusive Living (LCIL) run by disabled people for disabled people; and Paul from the Thistle Foundation speaks about how their exercise and lifestyle classes bring people ‘out of the darkness’ of social isolation and pain.