Psoriasis Scotland (PSALV), Scotland’s patient-led registered psoriasis charity, is holding a Public Information Meeting on Saturday 3rd March from 12.45 - 16.00 at the Scottish Health Service Centre's Conference Centre, Crewe Road South, Edinburgh (adjacent to the Western General Hospital).

There will be presentations and information provided by Dr Daniel Kemmett, Consultant in Dermatology at the Royal Infirmary of Edinburgh and Dr Stephen Boyle, Specialist Registrar in Rheumatology at the Western General in Edinburgh, with time for questions between presentations. Refreshments will be provided.

Please note - this is not a drop in session. To book a place, please telephone 0131 556 4117 or 01592 200185, or email
janice.johnson5@btinternet.co.uk.
You can visit our website at www.psoriasisscotland.org.uk We look forward to seeing you there!

The International Federation of Psoriasis Associations have announced that the winner of the 2011 Under the Spotlight Award is Celia Marin Rancel of Murcia in Spain.
Under the Spotlight is a unique series of documentaries which aims to demonstrate first-hand how the burden of psoriasis can impact a person’s life and how this may accumulate over time. Janice Johnson, the Director of PSALV, took part in the filming last year, documenting the affects that psoriasis and psoriatic arthritis have had on her life.
You can read more about Under the Spotlight here

A lack of vitamin D is causing an increase in the incidence of rickets in the UK, with a steep rise in the number of cases reported over the last 15 years. This disease had almost died out in the UK by the 1940's but has now returned, and health campaigners are concerned that there will also be an increase in related diseases. You can read more about the story on the BBC website here 

The Scottish Government has published the Chief Medical Officer's Annual Report for 2010, continuing with the theme of the creation of health as well as the burden of disease, which follows last year's report. The full report can be accessed on the Scottish Government's website here

Measures to combat the abuse of disabled parking and the Blue Badge scheme have been announced in Scotland and England. New badges will have added security features and the method to determine people's eligibility is being improved. You can read more about this story on the BBC website.

PSALV held a reception and MSP briefing on the 14th September 2011 at the Scottish Parliament. This photo shows the Director of PSALV, Janice Johnson, with Professor McInnes and the Public Health Minister Michael Matheson.

The Scottish Government has launched a fund of almost £2million to help children with disabilities and their families take a short break or access respite care. You can read more about this on the BBC website here

The European League Against Rheumatism invite all people with a rheumatic and musculoskeletal disease in their countries to participate in the competition by writing and submitting an essay on the topic of the year. In 2012 this will be “overcoming the challenges of getting around with a rheumatic or musculoskeletal disease”.
In addition to a prize of €2 000, EULAR provides the recipient with travel to Berlin and hotel accommodation in Berlin for up to 4 nights as well as an invitation to attend the opening ceremony and the gala dinner at the Congress. You can read more about this on the EULAR website

PSALV, Psoriasis Scotland, the only Scottish charity for people with psoriasis and psoriatic arthritis, exhibited at the Scottish Parliament from 25 - 27 October 2011, to mark the first anniversary of the introduction across Scotland of SIGN Clinical Guidelines for the diagnosis and treatment of Psoriasis and Psoriatic Arthritis and also to raise awareness of these painful conditions by highlighting World Psoriasis Day, 29 October.

Motion S4M-01150 - Fiona McLeod (Strathkelvin and Bearsden) (Scottish National Party) : PSALV and World Psoriasis Day

That the Parliament recognises World Psoriasis Day on 29 October 2011; welcomes the opportunity that this day provides to increase awareness of a condition that can not only be psychosocially debilitating for over 100,000 people in Scotland, but also physically debilitating for over 20,000 people who have the associated condition of psoriatic arthritis, and considers that Psoriasis Scotland Arthritis Link Volunteers (PSALV) does fine work in supporting people and providing much-needed awareness and information on a condition that needs to be highlighted to the general public.

This can be viewed along with the other Motions related to psoriasis by clicking here.

Today a special supplement on psoriasis was published in the UK newspaper the Guardian.The International Federation of Psoriasis Associations has been involved in the editorial part of the supplement. They hope that you will find it interesting and that it will raise awareness for psoriasis, not only in the United Kingdom, but wherever they are represented by their members.

You will find the supplement here.

Psoriasis can be a truly devastating disease, as it not only affects your health but can also have a severe impact on how you live your life. Many people with psoriasis experience social stigmatization and discrimination on a more or less daily basis, in a wide range of settings; at school, at work, at the gym, in public bath houses. In some countries people with psoriasis suffer even more deeply, as they are ostracized, humiliated or even shut out from society when their disease is confused with HIV/AIDS, syphilis or even leprosy. The misconception that psoriasis is an infectious disease, or that a person who has psoriasis isn’t hygienic, is what commonly leads to this isolating behaviour

World Psoriasis Day is an annual day specially dedicated to people with psoriasis/psoriatic arthritis. Conceived by patients for patients, World Psoriasis Day is a truly global event that sets out to give an international voice to the 125 million people with psoriasis/psoriatic arthritis.

On October 29 International Federation of Psoriasis Association, IFPA its members associations and support groups performs activities all over the world to raise awareness about psoriasis and give people with psoriasis the attention and consideration they deserve.

You can read more about the event at www.worldpsoriasisday.com

PSALV, Psoriasis Scotland are running an exhibit stand of their work in Holyrood this week from the 25th to 27th October in the Members lobby.

We look forward to seeing you there.

The ALISS project is a Scottish Government funded venture, and its main focus is to make information about Self Management support more findable. An event will be held in the Eric Liddell Centre in Edinburgh on the 25^th of October to start mapping this support. You are welcome to come along and

• hear about local health and wellbeing services

• share information about your service or project 

• help to begin building a map of Edinburgh's health and wellbeing support 

• learn more about how you can use ALISS to help with your own information services

For more information, see here

This document from the The Medicines and Healthcare products Regulatory Agency (MHRA) explains its role the regulation of medicines and medical devices and equipment used in healthcare and the investigation of harmful incidents. The MHRA now also looks after blood and blood products. MHRA is a government body which was set up in 2003 to bring together the functions of the Medicines Control Agency (MCA) and the Medical Devices Agency (MDA). You can access the document as a pdf by clicking here.

A new health lottery was launched recently to enable charities in Scotland, England and Wales to apply for a share in the projected £50 million a year in local grants to support health-related projects. Their website here provides more information on their forthcoming work.

Under the Spotlight is a unique series of documentaries which aims to demonstrate first-hand how the burden of psoriasis can impact a person’s life and how this may accumulate over time. Developed by the International Federation of Psoriasis Associations (IFPA) and its member associations, brave ‘Spotlighters’ from across the globe have agreed to be filmed over a number of years to reveal the impact psoriasis has had on all aspects of their lives, with the hope to raise disease awareness and share experiences with others.

We recently registered with the Royal Bank of Scotland 'CommunityForce' which is a new initiative that sees RBS working with local communities to support local people, projects and charities through funding.

To make the funding happen, we require as many people as possible to vote for this scheme.  Voting opened on 26th September and the project can be found at PSALV Psoriasis Scotland We would be very grateful if you could take some time to vote for PSALV - the RBS Community Force funding is based on maximum votes, so every vote is vital to us.

How to vote

To register to vote,

1. Go to the homepage at http://communityforce.rbs.co.uk and click on Register (or Login if you’ve registered before). You will be asked for your name, email address and a password, and a confirmation email will then be sent to you.
    
2. Once you’ve confirmed receipt, go to the homepage and select ‘projects’ and search for PSALV Psoriasis Scotland by project name.
    
3. Click the orange + box on the map, then ‘read more’.
    
4. Tick Accept RBS terms and conditions and VOTE.
    

The process only takes approximately 5 minutes

Thank you for your help!

A study of 4.5 million people in Denmark published in the European Heart Journal showed that people with psoriasis have nearly three times the normal risk of stroke and abnormal heart rhythm, with the highest risk amongst young patients with severe psoriasis.

Researchers believe this may be because the skin and blood vessels may share similar sources of inflammation. However, The Stroke Association said this should not be an immediate cause for concern.

You can read more about the study on the BBC website here.

The Skin Care Campaign Scotland (SCCS) has recently launched its website which can be accessed at http://www.skin-care-campaign-scotland.org. SCCS is an umbrella group which brings together a number of organisations, including PSALV, to campaign for improvements in care on behalf of patients in Scotland who suffer from skin disease and to inform the public, the media and relevant professional bodies about skin conditions and their treatment.

Online health petition to stop the closure of the Dermatology ward at Crosshouse Hospital Ward 2E, Ayrshire’s only Dermatology ward based at Crosshouse Hospital, is currently facing closure and a reduction in the number of specialist nurses, with patients transferred to general medical wards. PSALV urge you to register your opposition to this proposal by signing the online petition here

News from Tayside A refurbished phototherapy treatment unit with extended hours has been opened at Ninewells Hospital in Dundee for people with skin conditions. The new service will make it easier for people to attend, with the service open from early in the morning until the early evening and on a Saturday morning. You can hear more about via the STV news bulletin here.

The Scottish Government has introduced new national waiting time guarantee, known as the 18 Weeks Referral to Treatment Standard. Commencing in December 2011, this sets out the maximum time that patients will have to wait from referral to treatment for non-urgent patients, with many seen more quickly.

Patient pathways have been established to ensure a high level of care for all, ensuring that the patient is referred to the right professional when they need to be. A range of Dermatology Referral and Management Pathways have been developed, including one for psoriasis which can be accessed here.

The Scottish Intercollegiate Guidelines Network is looking for lay volunteers to help raise awareness of both the work that the Network does and the opportunities that are available to the public to assist in the writing of the guidelines and for patient involvement in their own communities. Further information is available here.

UPDATE is a disability information service which provides across-the-board disability-related information to organisations in the voluntary, public and private sectors. Members of the public can access general information and contact details of appropriate local or specialist services from their telephone helpline or via their website. Other services include the SCOOP database available to member organisations by subscription containing reliable, up-to-date and impartial disability information and a transcription service, translating small and medium sized documents into Braille, audio CD, digital audio, paper (large print) and electronic formats.

UPDATE can be accessed here http://www.update.org.uk

When Phil Mickelson, the US champion golfer, was diagnosed with psoriatic arthritis he decided to join with Amgen and Pfizer to help increase awareness and understanding of psoriatic arthritis and other related conditions such as rheumatoid arthritis and plaque psoriasis, and to launch the educational initiative ‘On Course with Phil’. Read his story and access the educational tools and resources available by clicking on the following link. Please note that this is an American site, but the content is still helpful.

http://www.oncoursewithphil.com/

Forthcoming Event - PSALV Briefing & Reception, Wednesday 14 September, 5.45 – 8.30, (Buffet 5.50 – 6.45)
Committee Room 1, Scottish Parliament, Holyrood, Edinburgh, for all Rheumatology and Dermatology staff  in Scottish Health boards

PSALV, Psoriasis Scotland, have pleasure in inviting you to the above Briefing & Reception on Psoriasis and Psoriatic Arthritis. With World Psoriasis day upcoming on 29 October 2011, Scotland’s charity, PSALV, wants to inform all MSPs of the impact of these conditions, the work of SIGN HIS, and the implementation of the new SIGN Guideline 121 on Psoriasis and Psoriatic Arthritis. These conditions affect over 100,000 people in Scotland alone.

Following the Welcome & Introduction, there will be a presentation on the impact of psoriasis and PsA in Scotland, and whether the new SIGN Guideline is being implemented.

Professor Iain McInnes of Glasgow University, Institute of Inflammation and Rheumatology, Dr Tony Ormerod leading Dermatologist from Aberdeen, and Dr Ali El-Ghorr from the SIGN HIS Executive will present as our expert speakers, with possible further presentations, including one from the Scottish Government. Further details will follow shortly.

If you or a colleague would like to attend, please contact Janice.johnson5@btinternet.com or Mairi.maciver@hotmail.com or telephone PSALV on 0131 556 4117 to reserve a place asap. There is no charge for this event.

Further details and information for guests attending events at the Scottish Parliament are available here.

The SMC User Group Forum is organising an SMC training day on the 21st September 2011, to be held in either Glasgow or Edinburgh.

The agenda is still being finalised, but will include speakers from the SMC. The event is aimed at the pharmaceutical industry, NHS staff, patient and public groups and charities, and will focus on improving the pharmaceutical industry's understanding of how to develop a high quality SMC submission and how patient and public representatives feed into this process. There will also be an opportunity to discuss some of the current challenges in relation to new medicines.

The cost of attending, including lunch and refreshments, will be £40. Please contact Fiona Grierson at the Association of the British Pharmaceutical Industry Scotland office (fgrierson@abpi.org.uk) if you would like to attend.

A report from Dundee University has concluded that thousands of people in Scotland have been prescribed drugs by their GPs which could potentially be harmful to their health. One of the findings of the study highlighted that prescribing anti-inflammatory drugs such as Ibuprofen to people with a history of stomach ulcers or kidney problems could also cause serious or fatal side effects.

Read more about the story on the BBC news website here http://www.bbc.co.uk/news/uk-scotland-tayside-central-13858442

The latest edition of the SIGN Patient Newsletter is now available to view online at http://www.sign.ac.uk/pdf/pnljune2011.pdf. June's edition contains the following .

• Information on the 3 new guidelines (management of early rheumatoid arthritis, management of adult testicular germ cell tumours and management of atopic eczema in primary care)
• A public information leaflet on deep-vein thrombosis
• An update to the BTS/SIGN guideline on asthma
• Information on the SIGN awareness volunteers
• Details of how to access the SIGN guideline app (including the "Psoriasis and psoriatic arthritis in adults" guideline) for the iPhone, iPad and iPod touch and Android phones and tablets
• Details of forthcoming events organized by other organisations

If you would like to join the SIGN Patient Network to receive an e-mail with the link to the newsletter on the day it's published, go to http://www.sign.ac.uk/pdf/patient_join_form.pdf.

The meeting of the Cross Party Group on Psoriasis and Psoriatic Arthritis will take place on Wednesday 22 June at 6.00pm in Committee Room 5. Anyone interested in attending the meeting should contact Mary Blackford prior to attending on 0131 348 5724 , or e-mail: mary.blackford@scottish.parliament.uk.

Details of forthcoming meetings of Cross-Party Groups pending re-registration or approval by the Standards, Procedures and Public Appointments Committee can be viewed here.

The next Cross Party Group meeting on Chronic Pain is an AGM Meeting to re-constitute the group and will be the first of this session.

The meeting is to be held at 6.00pm in committee room 5 at the Scottish Parliament on Wednesday 15 June 2011. Refreshments will be available from 5.30pm.

Here along with the agenda and legacy report are the documents which will aid in the discussion of the aims and objectives of this group.

The Agenda
The Legacy Report
All party group's aims and objectives
Registration Form RG1 (2007)
A Short Guide to All Party Parliamentary Groups

The All Party group's registered aims are:

'To raise awareness of chronic pain in children and adults and to provide a forum for discussion and debate amongst parliamentarians on those issues relating to the prevention, treatment and management of chronic pain and its associated conditions.'

The link to the parliament's website is:
http://www.publications.parliament.uk/pa/cm/cmallparty/register/chronic-pain.htm

We apologise for the late notice. Please contact us if you wish to attend or give your apologies.

Thank you

Andrea Ma
Co-Secretary to Cross Party Group
xpg@painconcern.org.uk

NEW ADDRESS Pain Concern, Unit 1-3, 62-66 Newcraighall Road, Fort Kinnaird, Edinburgh EH15 3HS, Tel 0131 669 5951,
E-mail info@painconcern.org.uk, www.painconcern.org.uk
HELPLINE 0844 499 4676