PSALV logo
 

The following patient factsheets have been kindly written for PSALV by our Clinical Advisors and can be downloaded for personal use. If you would prefer us to send you a copy please send an A4 stamped addressed envelope (please ensure the stamps are large letter ones) to PSALV, 54 Bellevue Road, Edinburgh, Midlothian EH7 4DE.

Phototherapy - by Dr Allan Matthews, Specialty Registrar and Dr Grant Wylie, Consultant Dermatologist, both of Allan Lyell Centre for Dermatology, Glasgow

Scalp Psoriasis - Dr Grant Wylie, Consultant Dermatologist, of NHS Greater Glasgow and Clyde.

Nail Psoriasis - Dr Gregory Parkins, Specialty Registrar and Dr Grant Wylie, Consultant Dermatologist, both of NHS Greater Glasgow and Clyde.

PSALV also has a number of free leaflets available upon request - again, please send an A4 stamped addressed envelope. 

Scaling the Heights - information on psoriasis and psoriatic arthritis from PSALV

Methotrexate - from AR UK (Arthritis Research UK)

Sulfasalazine - from AR UK (Arthritis Research UK)

Adalimumab - from AR UK (Arthritis Research UK)

Psoriatic arthritis - from AR UK (Arthritis Research UK)

Treating psoriasis and psoriatic arthritis - a booklet for patients and carers from SIGN

PLEASE NOTE:
Psoriasis Scotland Arthritis Volunteers Link (PSALV) is no longer operating as a charity, but is still providing patient information.

Latest Developments:

(04-DEC-2015) NEWS: IMPORTANT - Website closing

Very sadly, after many years of lobbying and work, we are closing this website and Facebook page at Christmas. We will add news and events to both sites until then. 

PSALV (Psoriasis Scotland) is run by disabled unpaid volunteers and now, at age 67, my severe painful crippling PsA, surgery, fatigue, lack of mobility and eye issues are  forcing me to rest, and therefore the site has to close.

If you wish to campaign, please get in touch with me personally as there are Cross Party Groups etc. at Holyrood where you can lobby on Scots arthritis health issues - Janice.johnson5@btinternet.com

Thank you for all your help and support over the years, and I wish you all the best. 

(23-NOV-2015) EVENT: Free 'Digital Health' conference on 9 December in Glasgow

The ALLIANCE think it's really important for people to have their say on how digital (internet-based) technology is used to improve their access to - and interaction with - NHS services. To help with this, they are inviting patients and people with long term conditions to attend a free Digital Health and Care conference on Wednesday, 9 December in Glasgow city centre.

The ALLIANCE and the Scottish Government will run two afternoon workshops with people at the conference, which will discuss:

·         The digital services that GP practices might offer to people in the future; and

·         The ‘Personal Health Record’ (a record every Scottish person will be given to record their own health and wellbeing information)

By attending the conference, people will be able to give their views (directly to policy makers) on the digital healthcare options offered in Scotland.

To register for the free conference, people should email Zahid.Deen@alliance-scotland.org.uk (if possible) by 2 December.  Zahid will confirm your place and send them more details about the event.

(23-NOV-2015) EVENT: Free 'Digital Health' conference on 9 December in Glasgow

The ALLIANCE think it's really important for people to have their say on how digital (internet-based) technology is used to improve their access to - and interaction with - NHS services. To help with this, they are inviting patients and people with long term conditions to attend a free Digital Health and Care conference on Wednesday, 9 December in Glasgow city centre.

The ALLIANCE and the Scottish Government will run two afternoon workshops with people at the conference, which will discuss:

·         The digital services that GP practices might offer to people in the future; and

·         The ‘Personal Health Record’ (a record every Scottish person will be given to record their own health and wellbeing information)

By attending the conference, people will be able to give their views (directly to policy makers) on the digital healthcare options offered in Scotland.

To register for the free conference, people should email Zahid.Deen@alliance-scotland.org.uk (if possible) by 2 December.  Zahid will confirm your place and send them more details about the event.

(11-OCT-2015) EVENT: Free places at Scottish Parliament psoriasis awareness event on 4th November!

This event, to be held at the Scottish Parliament Event, aims to raise awareness of psoriatic arthritis, a condition which affects around 38,000 people in Scotland alone. Early diagnosis, annual GP checks and correct treatment are vital.

The main speaker is Professor Iain McInnes, Rheumatology at Glasgow Royal Infirmary, Glasgow University, and the Institue of Infection and Inflammation, Glasgow. Professor McInnes is a Leading academic and world expert on Rheumatoid Arthritis and Psoriatic Arthritis. A new DVD on psoriasis/PsA will be shown.

If you'd like to attend please let us know asap and you will receive a formal invitation -  lorna.saunders@pagodapr.com

This is totally free and aimed at MSPs and others, so it will help greatly to have patients there with psoriasis/PsA.

(02-OCT-2015) NEWS: Link between psoriasis and depression

A new study of 12382 participants in the US who were part of the National Health and Nutrition Examination Survey (NHANES) from 2009 to 2012 were asked to complete a questionnaire to determine diagnosis of major depression.

The researchers identified 351 cases of psoriasis and 968 cases of major depression among the participants. Patients with psoriasis had a higher questionnaire score on average than those without a history of psoriasis.

You can read more about the study here

(18-SEP-2015) EVENT: Save the date - psoriatic arthritis awareness event

Just a reminder....this event, to be held at the Scottish Parliament Event, aims to raise awareness of psoriatic arthritis, a condition which affects around 38,000 people in Scotland alone. Early diagnosis, annual GP checks and correct treatment are vital. 

The main speakers are Professor Iain McInnes, Rheumatology at Glasgow Royal Infirmary, Glasgow University, and the Institue of Infection and Inflammation, Glasgow. Professor McInnes is a Leading academic and world expert on Rhuematoid Arthritis and Psoriatic Arthritis. Professor David Burden, Leading Dermatologist, will also speak, and a new DVD on psoriasis/PsA will be shown. 

If you'd like to attend please let us know asap and you will receive a formal invitation. Telephone 0131 556 4117 or email Janice.johnson5@btinternet.com

This is totally free and aimed at MSPs and others, so it will help greatly to have patients there with psoriasis/PsA.

(03-SEP-2015) INFO: ALLIANCE weekly bulletin

The latest edition of the ALLIANCE weekly bulletin is available to view here. It features news, information about Self Management Week 29/9-3/10, information on the Government's latest consultation 'what matters to you', events and tweets relating to health and social care in Scotland.

(24-AUG-2015) INFO: WHO calls for patient stories and best practice examples for psoriasis report‏

The World Health Assembly resolution WHA67.9 on psoriasis requests WHO to prepare a global report on psoriasis by the end of 2015, including “identifying successful approaches for integrating the management of psoriasis into existing services”

If you would like to share your stories of living with psoriasis with the World Health Organisation, or examples of good practice in health services that you have received, please email michaleki@who.int

(24-AUG-2015) EVENT: Save the date - psoriatic arthritis awareness event

This event, to be held at the Scottish Parliament Event, aims to raise awareness of psoriatic arthritis, a condition which affects around 38,000 people in Scotland alone. Early diagnosis, annual GP checks and correct treatment are vital. 

The main speaker is Professor Iain McInnes, Rheumatology at Glasgow Royal Infirmary, Glasgow University, and the Institue of Infection and Inflammation, Glasgow. Professor McInnes is a Leading academic and world expert on Rheumatoid Arthritis and Psoriatic Arthritis. A new DVD on psoriasis/PsA will be shown. 

If you'd like to attend please let us know asap and you will receive a formal invitation. Telephone 0131 556 4117 or email Janice.johnson5@btinternet.com

This is totally free and aimed at MSPs and others, so it will help greatly to have patients there with psoriasis/PsA.

(13-AUG-2015) INFO: Cross Party Group on Arthritis and Musculoskeletal Conditions

Members of the Cross Party Group on Arthritis and Musculoskeletal Conditions will be asked to submit details of work that they have been involved with in setting out key developments in the campaign to raise awareness of issues in arthritis and musculoskeletal conditions in Scotland. This will give the Groups some measure of its collective activities and their impact, and will cover legislation, ministerial correspondence, motions, debates, receptions/exhibitions and other other campaigning events.

(13-AUG-2015) INFO: How user friendly is your country's healthcare system in 2015?

For the 9th time since 2005, Health Consumer Powerhouse (HCP) is asking health campaigners across Europe to help it compile the annual Euro Health Consumer Index. The 2015 Index is designed to measure the user-friendliness of national healthcare systems across 35 countries in Europe.

If you would like to contribute your views on the condition of your country’s healthcare system in 2015, this year’s questionnaire for the Index is short (16 simple questions), and should take no more than about 10 minutes of your time to complete.

All responses will be anonymous.

The survey’s closing date is Monday, October 19th 2015. You can access the survey here

(13-AUG-2015) EVENT: Forthcoming Dermatology Masterclass for GPs and Healthcare Professional

This masterclass has been designed for GPs and primary healthcare professional and will provide a concise knowledge update, latest evidence, practical information and take home messages to improve the care of patients and outcomes. Subjects covered include differential diagnosis of skin lesions, acne, rosacea, psoriasis and skin cancer & possible treatment options for patients.

The class will be held on Saturday 22 August 2015, Cairndale Hotel, Dumfries and costs £45. More information is available here

(11-AUG-2015) NEWS: Patients With Psoriasis Should be Examined for Uveitis

A newly identified bidirectional association between psoriatic disease and uveitis has led researchers to suggest that patients with psoriasis and psoriatic arthritis should be closely evaluated for eye symptoms. Likewise, patients with prior or current uveitis should be closely evaluated for skin and joint symptoms. You can read more about this large scale study here

(30-JUL-2015) EVENT: Pop-up Conversation Cafe – National Conversation on a healthier Scotland

The ALLIANCE would like to invite you to a pop up Conversation Café with Cabinet Secretary for Health, Wellbeing and Sport, Shona Robison MSP hosted in partnership with the Health and Social Care Academy. This is the formal launch of the Scottish Government’s Healthier Scotland National Conversation.  The pop up café is an opportunity for citizens to engage with each other and the Cabinet Secretary to share their views on the development of health and social care services in Scotland. Contact  event@alliance-scotland.org.uk to book your place. 

(20-JUL-2015) INFO: ALLIANCE Involvement Network Update

The latest ALLIANCE Involvement Network Update is available to view here. It features news and events, information on the Scottish Government's Prescription for Excellence Consultation Forum, and articles relating to health and social care.

(03-JUL-2015) INFO: ALLIANCE Involvement Network Update

The latest fortnightly update from ALLIANCE Scotland is now available to view online. This update features information on Work4Me, the volunteering programme for people with long term conditions, health events in Scotland, a roundup of the Citizen Wellbeing Assembly, and forthcoming TV programmes relating to health and wellbeing. You can read the update here

(03-JUL-2015) INFO: EULAR launches the Edgar Stene Prize for 2016

EULAR has announced that on the 8th June 2016, the Edgar Stene Prize will be awarded to the winning essay on the topic “Living with a rheumatic or musculoskeletal disease (RMD): How I take action to enjoy life to the full”. Competitors should be invited to submit an essay not exceeding 2 pages (A4) in their own language to their national EULAR member organisation by 31 December 2015. For more information, go to the EULAR website

(26-JUN-2015) INFO: 4th National Co-production Conference report

The 4th National Co-production Conference took place earlier in June, and was a great success. You can read the conference proceedings here and follow the event - including including text, pictures, videos and tweets from the conference at #copro2015

(18-JUN-2015) EVENT: Clinical Rheumatology State of the Art 2013
This international summit in Edinburgh on the 3rd and 4th of October 2013 will bring together consultants and next generation rheumatologists to share and exchange clinical best practice through high-level discussion groups, debate and expert panel sessions. The summit will focus on four key topic areas:
 
Systemic lupus erythematosus
convened by Prof David D'Cruz, Lupus Research Unit, St Thomas' Hospital, London

Scleroderma
convened by Prof Christopher Denton, Royal Free Hospital, London
 
Rheumatoid arthritis
convened by Prof Iain McInnes, University of Glasgow, Glasgow, probably Scotland top Rheumatologist, world expert on psoriatic arthritis, and a friend to many patients and to PSALV.
Ankylosing spondylitis
convened by Dr Martin Rudwaleit, University Hospital Charité, Berlin
A key element of Clinical Rheumatology State of the Art will be the presentation of case reports submitted by delegates, as oral presentations or posters. The case reports will provoke debate and discussion on the management of complex cases. The event will give delegates the opportunity to discuss their practice and take away lessons which can be implemented immediately in a clinical setting. More information available here
(10-JUN-2015) INFO: Scotland first in the UK to grant access to Otezla (Apremilast), an oral treatment for adults with m

Celgene announced today that adult patients in Scotland with moderate-to-severe plaque psoriasis or active psoriatic arthritis will be the first in the UK to have access to OTEZLA (apremilast) on the NHS following positive recommendations from the Scottish Medicines Consortium (SMC).

Janice Johnson, our Director here at PSALV, commented that “Psoriatic arthritis and psoriasis are lifelong conditions that can have a profound impact on the physical and mental wellbeing of patients. Early diagnosis and effective treatment of psoriatic arthritis is key to improving physical function and their ability to carry out daily activities. A new oral treatment option that treats both these conditions is therefore a welcome new option for people with psoriasis and psoriatic arthritis in Scotland”.

OTEZLA is a first-in-class oral treatment for these associated conditions,3 and works by reducing the activity of an enzyme called phosphodiesterase 4 (PDE4), which is involved in the process of inflammation. By reducing the activity of this enzyme, Otezla can help to control the inflammation associated with psoriatic arthritis and psoriasis, and thereby reduce the signs and symptoms of these conditions. 

Unlike current systemic treatments available for psoriasis and psoriatic arthritis, OTEZLA does not require pre-screening for tuberculosis or regular blood tests3,10 which may help reduce the burden of hospital visits for patients.

You can read more about this on the Scottish Medicines Consortium page - Plaque psoriasis and Psoriatic arthritis 

(07-JUN-2015) INFO: LEO Pharma to set up a Patient Partner Programme - participants required

LEO Pharma is looking for people with psoriasis  to work with them to make sure that the views, issues and ideas of psoriasis patients are heard throughout the organisation and that they inform the decisions made by the company. They are looking to work with a small group of people who have psoriasis over a period of time, with the group helping to set the agenda for the programme at the outset and act as the 'patient conscience' for the company in this area.

Participants should be able to be involved for a minimum period of a year and commit to attend two face to face meetings in that period (the first being on the 14th July 2015).  Thereafter, patients partners could help with ad hoc projects according to their desire and ability to be involved.  Patients would be offered an honorarium to cover their time and any travel. expenses.

More information is available here or contact partnerships@leo-pharma.com.