NHS Education for Scotland have produced a number of booklets to cover various aspects of living with long-term conditions. One of our members thought that they may be of value. Click on THIS LINK to take you to the relevant page and scroll to the bottom for Patient Handouts or to go direct to the one dealing with pain CLICK HERE.
The term “medically unexplained symptoms” is used to describe a set of persistent physical symptoms (e.g. chest pain, dizziness, back pain) for which, after extensive investigation, there is no obvious underlying cause or diagnosis.
For those with persistent physical symptoms, the journey from symptom development to clear understanding and evidence-based treatment can be an arduous one. In an attempt to exclude more concerning underlying conditions, GPs often undertake a range of medical assessments and interventions. While necessary, these can cause patients to develop:
- unwanted psychological and physical side effects, adding to distress and disability
- beliefs about the nature and seriousness of their condition,
- Additional pain, fatigue and other symptoms due to pharmacological interventions.
In the absence of a clear cause or diagnosis despite persisting symptoms, patients can become increasingly distressed, while fear of what may be generating symptoms often leads to avoidance of daily activities. Further investigations may also place the patient at risk of harm, for instance, due to infection from exploratory operations, and exceeding safe doses of radiation.
At our recent AGM, the trustees proposed making a donation of £1000 to a relevant Scottish based research project. The membership attending the meeting agreed to donate £1500 to a project being coordinated at Aberdeen University. (The money was saved from a proposed budget cost of rewriting the website last year which was ultimately undertaken by a volunteer)
Dr Neil Basu from the university said
...my multi-disciplinary research programme aims to tackle challenges facing patients with all forms of vasculitis including GCA. I have attached a recent newsletter which I produced for our patients. It summarises our diverse research activities.
I manage a vasculitis research fund which pools together generous donations from various sources and which allows us to conduct substantial projects in this specific field
He also told us "In the future, we do aim to conduct more studies specifically in GCA and, as an example, I have attached a recent abstract (available on request) which we will be presenting next month at the International Vasculitis Conference in London. This is a small retrospective study detailing the promise of Mycophenolate for some GCA patients. One possible outcome of this work will be to integrate data from other large centres to examine whether our positive experience is consistently observed. I have already had conversations with Prof Justin Mason from the Hammersmith about this possibility."
See also an article on the unversity's website HERE
Lorna Neill and Christine Ritchie attended the University to meet with Dr Basu and present the cheque on Friday 15th May 2015.
They said "It was lovely to meet you and Christine this morning, thank you for coming in to see us and for your very kind gift. We’re really grateful for your support and look forward to keeping you updated on the difference your generosity will make."
We have now received a very kind letter of thanks from Professor Jeremy Kilburn, Senior Vice-Principal of the University of Aberdeen's Development Trust. You can view a copy HERE
PLEASE PLEASE KEEP RAISING AWARENESS
From an article published on the Mail online 5 May 2015 - one woman's story about symptoms that were missed until it was too late and she lost the sight of one eye. Please don't let it happen to anyone else.
Headaches that may mean you are about to go blind
Read more HERE
The Health and Social Care Alliance (Health & Social Care Alliance) have launched a competition.
The competition is open to people of all ages and abilities.The competition is free-to-enter with participants invited to enter their work in categories including:
- Short stories
- Short films
Closing date is 17 July and winners will be announced on Thursday 20 August.
For more information please follow THIS LINK .
Servier, a pharmaceutical company, is researching a potential new drug for the treatment of Giant Cell Arteritis.
Hospitals involved are:
- Southend University Hospital
- Wrightington Hospital, Wigan
- Freemand Hospital, Newcastle upon Tyne
- Barnlsey Hospital
PMRGCAuk's latest newsletter (Spring 2015) has now been mailed out. If you haven't received your copy by the end of April 2015 and would like one, please let us know. For a preview, please see the menu item Newsletters.
Previous news items are shown in the News Archive
AGM and Annual Meeting 2015 was a successful event again this year at The Queen's Hotel on Tuesday 21st April 2015 with over 50 members and supporters in attandence. Our guest speaker, Gary Cook: Rheumatology Specialist Pharmacist at Ninewells Hospital, Dundee provided are rare insight into the medications that many of our members take. We hope to be able to offer his presentation here soon.
Line up of trustees and Helpline volunteers (missing one who was working sadly)
For anyone who would like to reveiw a copy of our adopted Annual Report on our activities in 2014 please click 2014 Annual Report.
In October 2014, the Dundee group enjoyed a visit from an osteoporosis nurse. To download the slides shown by Karen Scrimgeour: Osteoporosis Specialist Nurse at the meeting entitled 'Bone Health Matters' please click HERE (you will need to save the file to your computer but please note that although every care has been taken, this has to be at your own risk). Alternatively you may like to watch a video version on YouTube by following THIS LINK . Please note that this presentation is the property of Karen Scrimgeour: Osteoporosis Specialist Nurse and the National Osteoporosis Society and must not be altered in any way.
Did you see the article in the Daily Mail recently (November 2014) where a gentleman explained about his experience of PMR? It was entitled "For months I shuffled like an old man - but an hour after taking a steroid I was reborn". To read the full article please click HERE
You may already be aware of the Integration of Health and Social Care, which is the Scottish Government's ambitious programme of reform to improve services for people who use health and social care services. Integration will ensure that health and social care provision across Scotland is joined-up and seamless, especially for people with long term conditions and disabilities, many of whom are older people. All integration arrangements as set out in the Act and in the Orders and Regulations, must be in place by 1 April 2016.
Each authority is managing it in a way that is appropriate for them but to see the overall time-line link please click HERE
Research papers and links are now being added HERE
We are including information in the Self Management section that we believe may be of help and interest.