EXPERIENCE AS A PATIENT
REP ON THE CLINICAL REFERENCE GROUP
FOR SPECIALISED
RHEUMATOLOGY, NHS ENGLAND.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
 |
| Dropping the dream team at my mother's |
In July 2014 I attended my first meeting as a
patient representative on the CRG for specialised rheumatology, NHS England.
Luckily for me, my first meeting in my ‘new’
role, was in an afternoon during the summer months, so, I was able (with huge
effort and determination on my part) to attend the meeting in person, in
central London.
Clinical reference groups (CRGs) are focused on
developing nationally consistent service specifications, policies, and service
improvement schemes, to then go on and be implemented by NHS England.
Their aim is to drive improvements in the
quality, equity, experience, efficiency and outcomes of commissioned
specialised services and this is reflected by the diverse backgrounds of its
members.
Their membership includes patients, carers,
patient organisations, clinicians, commissioners, public health and pharmacy
specialists, and other related health professional organisations such as
medical Royal Colleges.
There are currently 76 CRGs covering various
medical specialities.
Systemic Sclerosis (scleroderma) and Raynaud's
is included in the ‘specialised rheumatology’ group, part of the internal
medicine division.
I had received via Email prior to the meeting,
documentation and paperwork relevant to the afternoon’s discussions.
This enabled me to understand the background to
the issues being discussed, as well as, helped me to keep up with the flow of
the live topics!
I have attended the subsequent meetings, by way
of teleconference.
This facility has allowed me to participate,
whilst being respectful of my Raynaud's symptoms.
One of the projects which I was able to
contribute using my personal experience, was the Management of Digital Ulcers
in Systemic Sclerosis Policy.
This is currently open for public consultation
and can be accessed here:
Compared to the hard work and effort put into
this document by the medics, my effort was minimal, however, as a patient who
has lived with the nightmare of these excruciating ulcers for nearly 18 years,
I was extremely honoured to be part of the team who put together this concise
step by step document for digital ulcer treatment.
I sincerely hope that digital ulcer patients,
in future, will have their ulcers managed and treated optimally and quickly,
thereby preventing infection risk, and at worse, possible amputation.
At all times, I have been made to feel
extremely welcome and to be a valued contributor of the CRG, by the
Chairperson- Dr. Lanyon; the Programme Director for NHS England- Ms. Watson, as
well as by the other CRG members, including other patient representatives from
other autoimmune conditions.
As a ‘long term’ patient, it is very
encouraging and comforting to see at grass roots level, how dedicated the
medical professionals are, in trying to give the best care and treatment to
their patients, given the financial constraints and political landscape that
they are subjected to.
I feel extremely humbled to be part of such a
dedicated group, who have achieved some fantastic results for improving patient
care and experience, in not just the Raynaud's and Scleroderma field, but for
other autoimmune diseases and rheumatological conditions on a national level.
This article was written for The Raynaud’s
and Scleroderma Association's Spring Newsletter 2015
PLEASE DONATE to the ROYAL FREE CHARITY, to
help fund desperately needed MEDICAL RESEARCH at the SCLERODERMA UNIT, THE
ROYAL FREE NHS HOSPITAL.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
#Autoimmune #RareDisease #LifeChanging
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
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: Leaving a Legacy Gift, Click 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
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.
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:
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.
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
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
EXPERIENCE AS A PATIENT
REP ON THE CLINICAL REFERENCE GROUP
FOR SPECIALISED
RHEUMATOLOGY, NHS ENGLAND.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
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