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.

(13-MAY-2015) EVENT: Citizen Wellbeing Assembly, Murrayfield, Edinburgh 25 June 2015

You are invited to join the Alliance's Citizen Wellbeing Assembly to share your experiences, debate pertinent issues, and generate ideas to create a future where we can all enjoy good health and wellbeing across Scotland.  

If you have an interest in shaping Scotland’s health and social care, including people who access support and services, unpaid carers, third sector, NHS, local authorities, health and social care partnerships, policy makers, service planners, frontline practitioners and professional bodies then contact marianne.brennan@alliance-scotland.org.uk for more information or to book a place.

You can view the event on the Alliance website

(13-MAY-2015) INFO: ALLIANCE Weekly Members' Bulletin

The latest Members' Bulletin from Alliance Scotland is now available to view. It features information on the Health and Social Care Academy Creative Competition, news and events, the latest information on health and social care integration, and tweets of the week. 

(07-MAY-2015) INFO: Volunteers required to take part in psoriasis research

GKA Market Research are looking for people aged between 18-60 to take part in research to better understand the communications they have with their dermatologist. The research will involve the completion of two mobile app tasks based on consultations they have with their dermatologist and a 30 minute telephone interview.

They are specifically looking for people who:
1. have been diagnosed with Psoriasis
2. are on a systemic treatment and have been using it for at least six months (i.e methotrexate, acitretin, cyclosporine,  fumaric acid esters)
3. do not have any experience with a biologic treatment.
4. own a smartphone and are comfortable using an app on their phone.
There is a payment of £50 for your time. If you are interested in participating, please contact hayleygalpin@gilliankenny.com
(03-MAY-2015) EVENT: The Health and Social Care Academy Creative Competition

The Health and Social Care Academy Creative Competition is free-to-enter with participants invited to enter their work in categories including:

  • Poetry
  • Short stories
  • Photography
  • Short films
  • Music

The theme of the competition is ‘My Wellbeing, My Future’. Winning entries in each category will receive an exciting prize, have their work featured in Academy publications and activities and shared with the Scottish Government to help shape a refreshed long-term vision for Scotland’s NHS. For more information go to the Health and Social Care Academy's website

(03-MAY-2015) NEWS: ALLIANCE Weekly Members' Bulletin

The latest Bulletin is available from Alliance Scotland. It features news, events and information about social care and health integration, as well as its latest thinkpiece, 'Self Management; Lived Experience is Driving Change in Health and Social Care'. You can read the Bulletin on the Alliance website

(09-APR-2015) INFO: ALLIANCE Weekly Members' Bulletin now available

The latest version of the ALLIANCE Bulletin is now available to view here. It features news on health and social care, information about integration, details of forthcoming events, and Tweets of the Week. 

(03-APR-2015) EVENT: Living Well in Localities Learning Events

The Improvement Network for Integrated Care and Support is hosting Living Well in Localities regional learning events on May 7th (Beardmore); May 20th (Dundee) and May 28th (Heriot Watt). 

Each day will start with lived experience on the theme 'What Matters to Me' and conclude with a ‘Dragons Den’ session where individuals with lived experience challenge 3 partnerships on their plans. 

Partnerships will bring a team of up to 12 people e.g. service user / carer representatives; Third Sector, health and social care professionals, housing sector, independent sector, Managed Clinical Networks. If you would be interested in being involved in any of these events, please contact membership@alliance-scotland.org.uk

(03-APR-2015) EVENT: Conversation Café Exploring Involving Lived Experience
People Powered Health and Wellbeing are working with the Nursing and Health Care School, University of Glasgow to support their involvement of people who use health care services and unpaid carers.  
 
This conversation café style event on 22 April at the Nursing and Health Care School, University of Glasgow will focus on supporting the Nursing and Health Care School in developing a strategy for effective involvement with both their undergraduate and post graduate training courses.

If you would like to attend please email Lisa Gardner by 20 April including any access or dietary requirements.

(20-MAR-2015) INFO: ALLIANCE Weekly Members' Bulletin

The latest ALLIANCE Members' Bulletin is available to view here. The ALLIANCE has published a manifesto for the upcoming General Election, and is encouraging members to discuss issues affecting disabled people and people who live with long term conditions with their local candidates and ask for support for the ALLIANCE's manifesto. To discuss further contact Andrew Strong, Policy and Information Manager, the ALLIANCE on 0141 404 0231 by email at: andrew.strong@alliance-scotland.org.uk. The Bulletin also contains news items, details of forthcoming events and Tweets of the Week.

(10-MAR-2015) INFO: SCVO Member Bulletin

The lastest SCVO Member's Bulletin is available to view here. It features news about the Scottish Charity Awards application closing date on the 13th March, the forthcoming election, training events and opportunities and information about the Rural Direct project visits. 

(05-MAR-2015) EVENT: ARThritis Exhibition Private Viewing 27 March 2015

You are invited to the private viewing of second ARThritis exhibition, from 6.30pm to 8.30pm on Friday, 27 March at Sense Scotland’s TouchBase Centre, Kinning Park, Glasgow.

 The ARThritis exhibition forms part of the Joint Creativity project, which gives young people aged from 10 to 18 years with any form of arthritis the chance to express their experiences of arthritis through various art forms. 

At the exhibition you will be able to view art created to express how arthritis feels, and what having the condition means to children and young people. There will be the opportunity to speak to some of the artists, as well as to two of the key initiators of the project, Clare Hyatt and Jay O’Reilly, young women who are Fine Arts graduates and who have arthritis themselves.

Light refreshments will be available. Please RSVP to gillianm@arthritiscare.org.uk if you would like to attend.

(05-MAR-2015) NEWS: I came away feeling much better, more positive about my condition - patient story about their treatm

Patient Opinion allows patients to share their experiences of using health services - which in turn enables the NHS to improve healthcare.

This story details the fantastic care that one patient received from Dr Girish Gupta at Monklands Hospital in Airdrie. You can read more on Patient Opinion 

(05-MAR-2015) INFO: ALLIANCE Weekly Members' Bulletin

The latest Bulletin from Alliance Scotland is now available to view online. The Bulletin features news from both the health and social care sectors, information about The ‘My Skills, My Strengths, My Work’ employability campaign, created to help tackle employability and work related issues that face employees and potential employees living with long term conditions, forthcoming events, and Tweets of the Week. You can view the Bulletin here 

(26-FEB-2015) INFO: ALLIANCE Weekly Members' Bulletin

Alliance's weekly Bulletin is now available to view here. It features more about their draft manifesto, news about health and social care in Scotland inlcuding the latest information about integration, forthcoming events, and Tweets of the Week. 

(26-FEB-2015) INFO: SCVO Member Bulletin

The latest SCVO Member Bulletin is available here. If features information about The Gathering at the SECC for people involved in the third sector across Scotland, as well as news, forthcoming events, training and funding opportunities.  

(20-FEB-2015) EVENT: Help shape the ALLIANCE's manifesto for the UK General Election

The ALLIANCE is currently seeking members' input into their draft manifesto ahead of the upcoming UK General Election, which will take place on Thursday 7 May 2015.

The aim of the manifesto is to highlight the most critical issues for people who are disabled, living with long term conditions and unpaid carers in order to support members in campaigning and discussions with prospective parliamentary candidates in the run up to the UK election.

They invite members' views in shaping their manifesto and would welcome any comments to be sent to Colin Young, Senior Policy and Outcomes Officer; colin.young@alliance-scotland.org.uk, or Christopher Doyle, Policy and Information Assistant;christopher.doyle@alliance-scotland.org.uk, before Friday 6 March.

They will be holding an online Twitter discussion on 6 March 1-2pm to explore the issues with members in further detail. To get involved, follow the@ALLIANCEScot Twitter account.

(20-FEB-2015) INFO: Take part in a research study and have the chance of winning a £50 Amazon voucher!

Researchers at the University of Sheffield are looking for volunteers to test whether online self-help is useful for people who experience psychological distress in relation to their skin condition. 

The self-help materials they have developed are based on Compassion-Focused Therapy, which has been developed for people who experience shame and self-criticism. They have focused on one component of this, called mindfulness, which is a type of mental training where you practice focusing your attention and developing an accepting attitude towards yourself. 

In previous studies, Mindfulness has been found to improve skin healing and quality of life for people living with Psoriasis. They are interested in whether a self-help booklet and audio guide can be used to teach these skills effectively to people with a range of skin conditions, who also experience difficulties such as low mood, stress, or anxiety. 

If you are aged 16 or above and are interested in taking part, or know someone who is, please click on the following link, or forward it on: 

https://jfe.qualtrics.com/form/SV_4Mi1nodVUXPyf7n

If eligible, you can choose to be entered into the study, and will receive the self-help materials by email either straight away, or after a short waiting period. You will also be asked to complete a set of questionnaires several times during the study, to see whether the materials are effective. All participants who complete the study will be entered into a prize draw to win a £50 Amazon voucher. 

This study has received ethical approval from the Department of Psychology ethics committee at the University of Sheffield

(13-FEB-2015) INFO: Alliance Weekly Bulletin 13 February 2015

The latest edition of the Alliance Bulletin is available to view online, featuring news, events, updates on health and social care integration, and tweets of the week. You can view the Bulletin here

(21-JAN-2015) EVENT: Capturing the patient and carer voice at the Scottish Medicines Consortium

The Scottish Medicines Consortium (SMC) is holding a conference to engage the voluntary sector in its work.  Delegates will hear from a range of speakers from SMC, voluntary sector and the Scottish Government, covering topics including recent changes at SMC, how organisations can engage in the process to ensure that the patient and carer voice is heard and the view from the Scottish Government. There will also be a number of workshops which will focus on issues including methods and techniques for gathering  information about the patient and carer experience and understanding the SMC decision making processes.

This event is aimed at all patient/carer groups and voluntary sector organisations who are interested in being involved in the appraisal of new medicines in Scotland. This includes both those who have sent in submissions to SMC in the past and those who have never taken part but are interested in the SMC appraisal process for new medicines.

If you have any questions about the conference, please contact James Stewart, Public Involvement Officer at james.stewart7@nhs.net or on 0141 227 3292.