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Psoriasis Scotland Arthritis Link Volunteers (PSALV) is a Scottish charity (SC034239)
 

PSALV has been fortunate to receive further funding from the Scottish Government to assist us in our work over the next two years.

We are immensely grateful to the Government, but we do need more funding to carry out all the work we want to do



Latest Developments:

(08-APR-2014) NEWS: Factors in psoriatic arthritis associated with work productivity

Demographic, clinical and work-related factors in psoriatic arthritis affected patients’ work productivity, according to recent study results. Researchers in Toronto recruited 255 patients with psoriatic arthritis (PsA) who were attending a PsA clinic. A Questionnaire for the Assessment of Work-Related Factors was completed by all employed participants, with eligible participants also completing a Work Limitations Questionnaire (WLQ). Illness-related mean reduction in work productivity was 4.3%, with the study demonstrating that a significant number of PsA patients may experience issues with productivity in the workplace and that these limitations are significantly associated with demographic, clinical and work-related factors. You can read more on the story here

(03-APR-2014) INFO: Voluntary Health Scotland - April 2014 Newsletter

Voluntary Health Scotland's latest newsletter is available to view here. It features VHS and sector-wide news and events, as well as dates for your diary.

(03-APR-2014) INFO: Become part of the conversation with Patient Opinion

Natalie Deacon, Engagement and Support Officer from Patient Opinion will be hosting an information session at the ALLIANCE Hub in Glasgow from 10am-12pm on  Wednesday 16 April and would like to hear from ALLIANCE members, particularly those representing long term conditions and minority groups who are interested in having their stories heard and starting a dialogue with health services.

For more information, contact Natalie on 0141 416 8208 or at: natalie.deacon@patientopionion.org.uk

(03-APR-2014) INFO: Better Psoriasis Treatments Needed Worldwide, Panel Says

The panel, consisting of the International Federation of Psoriasis Association, the Center for Medicine in the Public Interest and the Society for Women’s Health Research, addressed the concern at a global level. They met at the 72nd Annual Meeting of the American Academy of Dermatology and stated that 125 million people suffer from psoriasis worldwide. They discussed the need for better diagnosis, treatment and support for psoriasis sufferers throughout the world. They recognize diagnosis and treatment has progressed, but also acknowledged that more progress is needed. Getting psoriasis recognized by the World Health Organization (WHO) as a serious disease is also one of their goals. You can read more on the story here

(01-APR-2014) INFO: Preparation for Spring with Niki Preston and Arthritis Research UK

Gardening blogger from Peterborough, Niki Preston, ‘The Two Fingered Gardener’, is helping to encourage gardening, particularly among people with arthritis and joint pain, who can find it difficult to undertake everyday tasks such as gardening, with their condition. You can read more about their week long campaign to get more people gardening here

(01-APR-2014) INFO: Patient Advice and Support Service (PASS)

The Patient Rights (Scotland) Act 2011 established the Patient Advice and Support Service which was introduced in April 2012. PASS is an independent service which provides free, accessible and confidential information, advice and support to patients, their carers and families about NHS healthcare.

The Patient Advice and Support Service:
• can provide you with information, advice and support if you want to give feedback or comments, or raise concerns or complaints, about healthcare provided by NHS Scotland
• helps you understand your rights and responsibilities as a patient
• works with the National Health Service (NHS) in Scotland to improve healthcare provision – work that can be done because of the feedback you provide.

You can access this service from any citizens advice bureau in Scotland.  Visit www.patientadvicescotland.org.uk for more details.

(31-MAR-2014) INFO: Participants required for focus groups in study conducted by researchers at Robert Gordon University

Robert Gordon's University are conducting a study to examine the use of mobile apps and devices by individuals with psoriasis for measuring and monitoring psoriasis severity. 

For the first phase of this study they wish to ask people with psoriasis about their use and experiences of apps and mobile devices. To do this they will be holding focus groups and they require people to participate in these groups. 

Three focus groups will take place in Scotland throughout May, one each in Aberdeen, Glasgow and Edinburgh. Travel expenses for getting to and from the groups will be reimbursed. 

To participate you must at least 18 years old, have active psoriasis and own a smart phone, tablet or mobile device.  

If you would like more information about this project or would like to participate in one of the focus groups then please contact Alison Reddish on a.c.reddish@rgu.ac.uk for further details. 

(29-MAR-2014) INFO: Psoriasis severity related to poor blood pressure control

Research from a population-based cohort in the United Kingdom in which patients had confirmed diagnoses of psoriasis plus an objective measure of psoriasis severity was presented at the recent American Academy of Dermatology annual meeting

The results suggest that patients with psoriasis and high blood pressure, and a hypertension diagnosis, need more effective management of their hypertension. You can read more on the story here

(28-MAR-2014) INFO: Health and Social Care Alliance Scotland Update - 26 March 2014

The latest newsletter from Alliance Scotland is available to view here. This edition features news, events and tweets relating to health and social care in Scotland, with a focus on the Alliance Labour Party Fringe Event. 

(28-MAR-2014) INFO: Have your say on proposed carers legislation

The ALLIANCE is asking members for their views on proposals for new legislation that aims to promote, defend and extend the rights of carers and young carers in Scotland. They are encouraging people to take part to share their views on whether the needs of carers of people with chronic skin conditions are well represented within the proposed changes in legislation. The survey is open until 1/4/14. You can read more and complete the survey on the Alliance website

(26-MAR-2014) INFO: New Medical Television Programme Looking for People with Psoriasis

Optomen Television, the producers of Mary Portas: Queen of Shops, Kevin McCloud’s Man Made Home and Heston Blumenthal’s Feast is producing a brand new TV medical series for the Discovery Network, and are looking for people with Psoriasis to take part in the programme to discuss their condition and to explain to others what it is like to live with it on a daily basis.

We’ll also be working with a number of specialists throughout this series and, for those who take part in the programme, they can offer a free (off-screen) consultation with one of them. For a no obligation, friendly and confidential chat with one of the team email healthshow@optomen.com or call 0203 227 5993 leaving your name, age and telephone number.

(22-MAR-2014) INFO: Psoriasis beyond the skin: an expert group consensus on the management of psoriatic arthritis and co

Expert recommendations to improve the detection and management of common co-morbidities in patients with moderate-to-severe psoriasis were presented in the Journal of the European Academy of Dermatology and Venereology recently.

A systematic literature review was conducted on some common co-morbidities of psoriasis-cardiovascular (CV) diseases (including obesity, hypertension, hyperglycaemia and dyslipidaemia), psychological co-morbidities (including depression, alcohol abuse and smoking) and PsA-to establish the incidence and impact of each. Data gaps were identified and a Delphi survey was carried out to obtain consensus on the detection and management of each co-morbidity. The expert panel members for the Delphi survey comprised 10 dermatologists with substantial clinical expertise in managing moderate-to-severe psoriasis patients, as well as a cardiologist and a psychologist with an interest in dermatology.

The article provides useful and practical guidance for the detection and management of common co-morbidities in patients with moderate-to-severe psoriasis. You can read more here

(20-MAR-2014) NEWS: First-of-Its-Kind Multinational Survey Confirms Psoriasis and Psoriatic Arthritis Patients Are Frequ

The Multinational Assessment of Psoriasis and Psoriatic Arthritis (MAPP) survey is the largest comprehensive survey of its kind to look into the impact psoriasis and psoriatic arthritis (PsA) have on patients' lives, revealing several areas which warrant further attention and action, including high rates of undertreatment, a mismatch between patient/physician assessment of the disease, and the desire for new treatment options.

The MAPP survey evaluated how psoriasis and PsA affects patients' lives. Interviews were conducted with 3,426 patients as part of a randomly selected telephone survey of 139,948 households in the United States, Canada, France, Germany, Italy, Spain and the United Kingdom. 

The survey highlighted the need for safe and effective therapies for patients with psoriasis and PsA. The survey also found that a large number of both psoriasis and PsA patients were either being undertreated or were not receiving doctor-prescribed treatments. It also confirmed that psoriasis and PsA have a considerable impact on patient quality of life, and suggests there is a disconnect between the way patients and physicians define severity. You can read more about the MAPP survey here

(16-MAR-2014) NEWS: UCB's Cimzia launched across British Isles for psoriatic arthritis

A new treatment option for psoriatic arthritis is now available in the UK and Ireland with the launch of UCB's Cimzia (certolizumab pegol) this week. 

The drug, in combination with methotrexate, is used to treat active psoriatic arthritis in adults who have had an inadequate response to prior therapy with disease-modifying antirheumatic drugs (DMARDs).

"Patients seem to have a quick and effective response to this particular treatment with symptoms improving as early as week one, which is a huge positive to someone living with the emotional and psychological effects brought on by psoriatic arthritis," said Stefan Siebert, a Senior Lecturer in Rheumatology at the University of Glasgow and Honorary Consultant Rheumatologist NHS Greater Glasgow and Clyde. You can read more on the story here

(16-MAR-2014) INFO: The mental health of young people with long term conditions - project participants required

 The Mental Health Foundation (MHF), in partnership with Young Scot, Action for Sick Children, the Alliance and Snook, is delivering a project which aims to improve the mental health and wellbeing of young people (aged 11-18) living with physical long term conditions in Scotland. The project is being delivered as research shows that young people with long term conditions are at an increased risk of developing mental health problems such as depression. 

The first phase of this project will involve conducting quantitative and qualitative primary research with young people, their families, carers and professionals who work with them, to explore the mental health and wellbeing implications of living with a long term condition as a young person. This will include:

  1. An online survey of young people with long term conditions across Scotland to explore current levels of mental wellbeing, sources of support and service gaps (April 2014).
  2. In-depth interviews and /or focus groups with young people with long term conditions living in Edinburgh and the Lothians (May – July 2014)
  3. Telephone interviews with family members, carers and professionals working with young people with long term conditions in Edinburgh and the Lothians (May – July 2014)

The findings of this research will be used to inform a co-production process that will lead to the development of pilot interventions to support the mental health and wellbeing of young people living with long term conditions. The development of the pilots will be led by young people in partnership with service designers and professionals. These pilots will be based in Edinburgh and the Lothians as a condition of funding.

If you, or someone you know, is interested in taking part, please contact Hannah Briggs - hbiggs@mentalhealth.org.uk 

(12-MAR-2014) NEWS: Scottish Medicines Consortium (SMC) Approve Stelara for Use in Psoriatic Arthritis

The SMC have accepted that Ustekinumab (Stelara) can be prescribed for patients with active psoriatic arthritis who have failed on, or are unsuitable for, treatment with an anti-tumour necrosis factor (TNF) drug in Scotland. 

SMC previously accepted Ustekinumab (Stelara) for restricted use in the treatment of moderate to severe plaque psoriasis in specified patients.

  • Two studies have shown that ustekinumab improved symptoms of psoriatic arthritis more effectively than placebo (a dummy medicine containing no active treatment) at 24 weeks, in patients with active psoriatic arthritis who had an inadequate response to disease modifying anti-rheumatic drugs or non-steroidal anti-inflammatory drugs.
  • An economic analysis compared ustekinumab with other medicines commonly used to treat psoriatic arthritis. Despite some weaknesses and uncertainties in the analysis, it was considered to offer value for money.

SMC accepted ustekinumab for restricted use because it was effective and there was an unmet treatment need in psoriatic arthritis patients who are not suitable for or have failed on anti-TNF medicines.  

Ustekinumab (Stelara) can be used alone or in combination with methotrexate.  An initial dose of 45mg is administered via an injection (suncutaneously), followed by a 45mg dose four weeks later and then every 12 weeks thereafter.  Alternatively, 90mg may be used in patients with body weight above 100kg.  The SMC state that consideration should be given to discontinuing treatment in patients who have shown no response after 28 weeks of treatment.  Also, that it is intended for use under the guidance and supervision of a physician experienced in the diagnosis and treatment of psoriasis or psoriatic arthritis.

Further information can be found on the SMC website.

(10-MAR-2014) INFO: UK waiting times for RA and PsA patients: an interview with Dr Marwan Bukhari, Consultant Rheumatolo

Read an interview with Dr Marwan Bukhari, Consultant Rheumatologist at the University Hospitals of Morecambe Bay NHS Foundation Trust, about the 12 week 'window of opportunity' recommended by the British Society of Rheumatology, and how waiting times across the UK, in comparison to other countries, meet this recommendation. You can read the interview here

(07-MAR-2014) INFO: The EUPATI Training Course, "Patient Experts in Medicines Research & Development" now open for appli

The European Patients' Academy on Therapeutic Innovation (EUPATI) have announced an exciting and unique opportunity offering expert training in medicines research and development, specifically tailored for advocates of people with long term conditons.

The EUPATI Training Course, "Patient Experts in Medicines Research & Development", is a unique, extensive training course covering six modules spanning a range of topics including discovery of medicines, planning of medicines development and clinical trials.

Applications are now open to:

- Employees or volunteers of an organisation representing people who experience chronic and/or long term conditions

- People who live with long term conditions who are not affiliated to an organisation

- Family members and unpaid carers of people who experience chronic and/or long term conditions

For more information and an application form go to the EUPATI website 

(07-MAR-2014) INFO: Arthritis Medicines Survey

Arthritis Research UK have been working with Pro Bono Bio, the manufacturer of a new healthcare product for osteoarthritis, and are conducting a questionnaire with them in order to get feedback about people' experiences of managing pain, through healthcare products.

If you are able to spare a couple of minutes to complete a confidential questionnaire, you will help to provide first hand experience which will be invaluable for their research. Online questionnaire here

(25-FEB-2014) NEWS: Pruritus (itching) intensity and psoriasis severity often not correlated

Targeted antipruritic therapies are needed for patients with psoriasis and other dermatologic conditions, according to recent letter to the editor published in theJournal of American Academy of Dermatology.

Previous reports in the literature suggest an estimated 70% of patients with psoriasis have at least moderate pruritus and there are conflicting reports regarding a link between pruritus intensity and psoriasis disease severity. In addition, impact of topical corticosteroids and vitamin D analogs on pruritus in psoriasis has not been effectively studied. You can read more on this story on The Clinical Advisor website

(25-FEB-2014) NEWS: Cardiovascular disease (CVD) more prevalent with psoriasis

Subclinical atherosclerosis and endothelial dysfunction are more prevalent among patients with psoriasis, according to results of a recent meta-analysis carried out by the Baptist Health Medical Group's Center for Prevention and Wellness Research, in Miami Beach, Florida, prompting researchers to call for cardiovascular disease screening in this population. 

It was found that out of the 12 studies reviewed, individuals with psoriasis were consistently found to have a higher carotid intima-media thickness (CIMT) and had a higher burden of coronary artery calcification (CAC), arterial stiffness and endothelial dysfunction. This association persisted after accounting for traditional risk factors, suggesting that psoriasis itself confers increased CVD risk. You can read more on The Clinical Advisor website.

(13-FEB-2014) INFO: NHS Scotland would like to hear your views to improve the Key Information Summary

NHS Scotland would like to you to ask for your help to achieve a robust evaluation of the Key Information Summary (KIS). As you may be aware KIS is a new development in NHS Scotland pioneering a shared electronic medical record between healthcare professionals. KIS was introduced to all GP practices in Scotland from early 2013 and is now complete.  A KIS created within a GP surgery can be accessed by clinicians outside the practice - in NHS 24, Out of Hours services, Accident and Emergency, the Scottish Ambulance Service and in Secondary Care. KIS can be used to create detailed anticipatory care plans (or “ACPs”) for patients with more complex medical needs.

A questionnaire is available here - the Scottish Government would be very grateful for your feedback and views.

(08-FEB-2014) INFO: Psoriasis researchers identify molecular changes responsible for skin discoloration

A new study supported by the Milstein Medical Research Program at The Rockefeller University has uncovered the molecular roots of skin discoloration that is often associated with psoriasis, suggesting the possibility of new treatments for pigmentation changes seen not only in psoriasis, but also in other conditions such as eczema and acne. In psoriasis, the culprit is a class of immune system molecules known as cytokines. You can read more about the study here

(08-FEB-2014) INFO: Voluntary Health Scotland - February 2014 Newsletter

Voluntary Health Scotland's latest newsletter is available to view here. It features VHS and sector-wide news and events, as well as dates for your diary.

(08-FEB-2014) INFO: PSOLAR results show no patterns of cardiovascular events

Recent reports on results from the Psoriasis Longitudinal Assessment and Registry (PSOLAR) study show there are no distinct patterns of major adverse cardiovascular events (MACE), and there are limited rates of malignancy, overall.

Results of the PSOLAR study were revealed in a poster presentation at MauiDerm 2014 last week.

“PSOLAR is a multicenter, longitudinal, observational study evaluating long-term safety and clinical outcomes for patients receiving (or eligible to receive) treatment for psoriasis with biologics and/or conventional systemic agents,” according to the reports.

You can read more about the findings of PSOLAR here

(29-JAN-2014) NEWS: Public backing for Scottish chronic pain centre

People who have long term conditions and their carers have supported calls for a new specialist centre for chronic pain during a Scottish Government consultation on the issue.

In May 2013, the Cabinet Secretary for Health and Wellbeing, Alex Neil MSP, announced his intention to ensure that a specialist intensive chronic pain management service is available in Scotland. The majority of respondents backed the creation of a ‘Centre of Excellence’ for chronic pain in a single location in Scotland.

You can read more on the story here

(27-JAN-2014) NEWS: Rheumatoid and psoriatic arthritis sufferers waiting months to see specialist

Patients with the debilitating diseases of rheumatoid arthritis (RA) and psoriatic arthritis (PsA) have seen their delays steadily increase by over 10% in the past 10 years, according to the research commissioned by Merck Sharp & Dohme Limited (MSD). Nearly a third of the 254 patients surveyed who were diagnosed with RA or PsA in the past two years (2011-2013) had waited more than 12 weeks to see a specialist rheumatologist after presenting with symptoms to their GP, compared with one fifth of those diagnosed in 2000-2005. 

The research found that for many patients, waiting times fell far outside of the British Society for Rheumatology (BSR)-recognised 12-week ‘window of opportunity’. This is a key timeframe within which to accurately diagnose and begin effective treatment, allowing for dramatic reduction in the risk of further pain and disability and their associated costs. You can read more on the story here

(24-JAN-2014) NEWS: NEWS VIDEO EDUCATION LAB/CME BOOKS MEETINGS CAREERS Healio Dermatology Psoriasis News Psorias

Patients with psoriasis had a greater risk for developing type 2 diabetes mellitus, with disease severity increasing the risk, according to recent study results. 

Researchers used data from the Taiwan National Health Insurance Research Database to conduct a cohort study of 6,611 patients with psoriasis which showed that patients with psoriasis are at a moderately higher risk of developing type 2 diabetes compared with the risk in those without a history of psoriasis. You can read more on the story here.