UK
Guidelines for the Treatment and Management
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
In June 2016, Scleroderma Awareness Month, the
first national UK guidelines for the treatment of scleroderma (systemic
sclerosis) were published in the international journal ‘Rheumatology’, as well
as, on the British Society for Rheumatology (BSR) website.
These guidelines were put together by the BSR and
BHPR (British Health Professionals in Rheumatology):
‘to develop an expert driven evidence based series of
recommendations
for the management of scleroderma.’
Dr Peter Lanyon, Consultant Rheumatologist, has now
completed his first year of the 3 year Presidency role of the BSR.
Dr Lanyon set out his plans and vision for an improved musculoskeletal / rheumatological healthcare / patient experience, with an ‘all hands on deck’ approach. (Although, sclerodactyl hands may not be much use, if taking this in a literal sense).
Dr Lanyon set out his plans and vision for an improved musculoskeletal / rheumatological healthcare / patient experience, with an ‘all hands on deck’ approach. (Although, sclerodactyl hands may not be much use, if taking this in a literal sense).
It is very encouraging to see that the rare
disease, non genetic, rheumatological conditions (this includes scleroderma,
vasculitis, myositis etc) have been outlined specifically, for areas of improvement,
as by the UK Government’s commitment to such by 2020.
To read more about this, Click here
To read more about this, Click here
In my view, Dr Lanyon is another unsung hero and
blessing to the global scleroderma community, the rare disease community and
the musculoskeletal community.
I have the pleasure of being a member of the NHS Clinical Reference Group (CRG) for Specialised Rheumatology, which Dr Lanyon chaired prior to taking on his BSR Presidency role.
I have the pleasure of being a member of the NHS Clinical Reference Group (CRG) for Specialised Rheumatology, which Dr Lanyon chaired prior to taking on his BSR Presidency role.
I witnessed at first hand, the
selfless dedication and extra miles which Dr Lanyon demonstrated in order to
improve the day to day reality and care for patients, as well as improving the
standards of the NHS as a world class leading provider of healthcare.
The next annual BSR conference is scheduled to take
place in Liverpool, 1st - 3rd May 2018.
To watch my presentation ‘Systemic Sclerosis – A Patient’s
Perspective’ which I gave at the 2015 BSR annual conference, Click here
Professor Chris Denton, Royal Free Hospital and UCL Division of Medicine, Chair of the BSR/BHPR Scleroderma Guideline development working group, another unsung hero and blessing to the global scleroderma community, provides the following helpful executive summary to the UK national scleroderma guidelines, and, an insight into the important background to their formulation:
Professor Chris Denton, Royal Free Hospital and UCL Division of Medicine, Chair of the BSR/BHPR Scleroderma Guideline development working group, another unsung hero and blessing to the global scleroderma community, provides the following helpful executive summary to the UK national scleroderma guidelines, and, an insight into the important background to their formulation:
‘These guidelines are important because they
summarise the current best practice for treating the major complications of
systemic sclerosis and also address the overall approach to disease management
in the UK.
They have been developed under the auspices of the SAGWG (Standards, Audit and Guidelines Working Group) of BSR that has developed a process that is accredited by NHS evidence.
This is important since it means that the guideline is NICE accredited and should therefore be taken very seriously within the NHS as defining the standard of care for patients and access to therapies.
Embedded within the guideline are important NHS England policies for the management of digital ulcers and the pathway developed for assessment and delivery of autologous stem cell transplantation for appropriate cases of diffuse systemic sclerosis.
They have been developed under the auspices of the SAGWG (Standards, Audit and Guidelines Working Group) of BSR that has developed a process that is accredited by NHS evidence.
This is important since it means that the guideline is NICE accredited and should therefore be taken very seriously within the NHS as defining the standard of care for patients and access to therapies.
Embedded within the guideline are important NHS England policies for the management of digital ulcers and the pathway developed for assessment and delivery of autologous stem cell transplantation for appropriate cases of diffuse systemic sclerosis.
The
guideline process involved establishing a development group that included
rheumatologist, scleroderma experts, pharmacists, allied healthcare
professionals, specialist nurses, primary care representatives and patients.
In this way all aspects of the disease and management could be included. A comprehensive literature review of all the evidence supporting treatments for scleroderma was an important starting point and a group of dedicated clinical fellows undertook this work.
There was a series of telephone and face to face meetings over 2 years that led to the development of the draft guideline. This was then reviewed by BSR SAGWG and by external referees.
Comments were incorporated and the revised guideline was then finalised and submitted for open consultation so that anyone could comment and have input. After this process the final guideline was written, this was submitted for approval of BSR and then for publication in Rheumatology [3].
In this way all aspects of the disease and management could be included. A comprehensive literature review of all the evidence supporting treatments for scleroderma was an important starting point and a group of dedicated clinical fellows undertook this work.
There was a series of telephone and face to face meetings over 2 years that led to the development of the draft guideline. This was then reviewed by BSR SAGWG and by external referees.
Comments were incorporated and the revised guideline was then finalised and submitted for open consultation so that anyone could comment and have input. After this process the final guideline was written, this was submitted for approval of BSR and then for publication in Rheumatology [3].
This is
not the end of the process since the guideline are reviewed and updated every 5
years according to NHS Evidence protocols.
This is a landmark for UK scleroderma patients and an important one at a time of major NHS change and also challenged and competition for resources for rare diseases.
It complements the other recommendations being updated such as this of EULAR (European League Against Rheumatism) and the UKSSG (UK Scleroderma Study Group) best practice consensus documents [4].'
This is a landmark for UK scleroderma patients and an important one at a time of major NHS change and also challenged and competition for resources for rare diseases.
It complements the other recommendations being updated such as this of EULAR (European League Against Rheumatism) and the UKSSG (UK Scleroderma Study Group) best practice consensus documents [4].'
The structure of the UK national guideline is
divided into 3 sections:
Part A:
general approach to SSc management
This section
highlights the importance of an early diagnosis with referral to a specialist
scleroderma centre followed up with management within the framework of a
multidisciplinary team.
Part B:
key therapies and treatment of organ-based disease
This section highlights all of the major
complications and potential organ involvement, as well as possible treatment
options.
Topics include: Raynaud’s
phenomenon, digital ulcers, lung fibrosis, pulmonary arterial hypertension, gut
involvement, renal involvement, cardiac manifestations, skin manifestations,
calcinosis, musculoskeletal manifestations, ASCT.
I am particularly
honoured to have been a member of the medical team who compiled the current NHS
guidelines for digital ulcer management in scleroderma.
Part C: service organization and
delivery within NHS England
Scleroderma, SSc should be diagnosed promptly,
investigated appropriately and managed within an integrated system of primary,
secondary and tertiary level care.
The guidelines are scheduled to be reviewed by the
NHS in 2019
References for more information:
- 1.https://academic.oup.com/rheumatology/article/55/10/1906/2196591/BSR-and-BHPR-guideline-for-the-treatment-of#sec-4
- 2.http://rheumatology.oxfordjournals.org/content/early/2016/06/29/rheumatology.kew224.full#sec-4
- 3.BSR Guideline executive summary – Rheumatology 2016
- 4.UKSSG Consensus Best Practice Documents available here
BSR and BHPR guideline for the treatment of systemic sclerosis
- Christopher P. Denton1, Michael Hughes2, Nataliya Gak1, Josephine Vila3, Maya H. Buch4, Kuntal Chakravarty1, Kim Fligelstone1, Luke L. Gompels5, Bridget Griffiths3, Ariane L. Herrick2, Jay Pang6, Louise Parker7, Anthony Redmond4, Jacob van Laar8, Louise Warburton9, Voon H. Ong1, on behalf of the BSR and BHPR Standards, Guidelines and Audit Working Group
Author Affiliations
- 1Centre for Rheumatology, Royal Free Hospital, London
- 2Rheumatology Department, Salford Royal NHS Foundation Trust, The University of Manchester, Manchester Academic Health Science Centre, Manchester
- 3Department of Rheumatology, Freeman Hospital, Newcastle upon Tyne
- 4Leeds Institute of Musculoskeletal and Rheumatic Medicine, Chapel Allerton Hospital, Leeds
- 5Rheumatology Department, Musgrove Park Hospital, Taunton,
- 6Pharmacy Department
- 7Centre for Rheumatology, Royal Free Hospital, London, UK
- 8Rheumatology and Immunology, UMC Utrecht, Utrecht, The Netherlands
- 9Primary Care, Telford and Wrekin NHS Trust, Telford, Shropshire, UK
For the
scleroderma patient, these guidelines are a quantum leap in progress for
scleroderma best practice management and care.
These guidelines can be used universally around the world, especially for those countries who, due to their size and economic climate, are not able to produce such recommendations for their scleroderma patients.
These guidelines can be used universally around the world, especially for those countries who, due to their size and economic climate, are not able to produce such recommendations for their scleroderma patients.
As with
all things, change is a constant. I very much hope that by the time of the NHS
scheduled review for the guidelines in 2019, more, and improved treatments have
been made available, as well as, identification of the causative factors of
scleroderma have been discovered.
It is
with huge gratitude and thanks to the super-human Prof Chris Denton for
championing the formulation of the best practice management guidelines for the
treatment of scleroderma in the UK, along with the numerous expert medics who
assisted with this.
To read more:
#SclerodermaFreeWorld
#RaynaudsFreeWorld
An edited version of this article was published here, in my Column with Scleroderma News. July 2016.
Planning for the Future, Click here
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
An edited version of this article was published here, in my Column with Scleroderma News. July 2016.
Scleroderma Family Day
2020
25th
Anniversary Meeting
The Atrium, Royal Free
Hospital, London, NW3 2QG
Chair: Professor Chris
Denton
PROVISIONAL PROGRAMME
09.30 – 10.00 Registration
and Coffee
10.00 – 10.20 Welcome Dame
Carol Black
Prof Chris Denton &
David Abraham
10.20 – 10.40 What
is a Biopsy? Dr Kristina Clark
10.40 – 11.05 Dental
aspects of Scleroderma Prof Stephen Porter
11.05 – 11.25 Gastrointestinal
problems – Dr Fiza
Ahmed
shedding
new light on old problems
11.25 – 11.50 Pulmonary
hypertension and the heart Dr Gerry
Coghlan
11.50 – 12.15 Scleroderma
cohort studies – Dr
Francesco
‘Learning
from our patients’ del Galdo
12.15 – 14.15 LUNCH
BREAK – see below
14.15 – 14.45 25
years of progress – Prof
Chris Denton
from
‘black box’ to ‘positive trials’
14.45 – 15.15 International
speaker – Dr
Madelon Vonk
Scleroderma
Management in Netherlands
15.30 Raffle
Lunchtime Discussions Groups /
Demonstrations include:
Clinical Trials Rachel
Ochiel and team
National Institute of Health Research Christine Menzies
Drug Information / monitoring Pharmacy
Massage Keith Hunt MBE
Pulmonary Hypertension Education / nursing Sally
Reddecliffe/Adele Dawson
Rheumatology Laboratory Research
Laboratory Staff
Scleroderma Education / Nursing Louise
Parker/ Joseph Cainap
Thermography Dr Kevin Howell
SRUK Ollie Scott
Sjogren’s syndrome British
Sjogren’s Society
To Read My Articles:
Gift in My Will, Click here
Planning for the Future, Click here
Rare Disease Day:
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
Read more, here.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Rare
Disease Day is a fantastic opportunity for the entire rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides –
Medical
Research
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same overall.
For optimum
patient care, 3 hallmarks preside:
INVESTMENT in MEDICAL RESEARCH is CRUCIAL.
To read my articles:
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
SCLERODERMA:
Global Patient Profiles 2018 Video, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
 |
| June 2019 |
 |
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell.
I am truly humbled and inspired by their work ethic and commitment to
their patients.
I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004.
1st March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis.
 |
| Chat Magazine May 2019 |
I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, here
World Scleroderma Day
2015, 29th June.
 |
| James Carver, myself, Prof Chris Denton |
I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
Raynaud's:
October:
Raynaud's, Click here
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
UK
Guidelines for the Treatment and Management
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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