Monday 23 February 2015

EXPERIENCE AS A PATIENT REP ON THE CLINICAL REFERENCE GROUP FOR SPECIALISED RHEUMATOLOGY, NHS ENGLAND

EXPERIENCE AS A PATIENT REP ON THE CLINICAL REFERENCE GROUP
FOR SPECIALISED RHEUMATOLOGY, NHS ENGLAND. 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld 

 blog.raynaudsscleroderma.co.uk  



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   
 
  
 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   
 
 
 
 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click 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     

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  
 
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.

To read about medical research at the scleroderma unit, Click here   

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:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

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  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

Importance of an early diagnosis, Click here   
    
Taking Part in Clinical Research Trials, Click here     

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here    

Expert Specialist Centres, Click here      
  
My Skin is Cured from Scleroderma, Click here   
    
UK Guidelines for Managing and Treating Scleroderma, Click here        

Fatigue, Click here         

Mobility, Click here      

Diet and nutrition, Click here      


Raynaud's- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    



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   

 

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.  

Read more, here.    

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 2018, Click here  

World Scleroderma Day 2017, 29th June, Click here    

World Scleroderma Day 2016, 29th June. Origins of the date, Click 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  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here   

To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here 

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  


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. 

   

  
Last Update: Feb 2020.       


EXPERIENCE AS A PATIENT REP ON THE CLINICAL REFERENCE GROUP
FOR SPECIALISED RHEUMATOLOGY, NHS ENGLAND. 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld 

 blog.raynaudsscleroderma.co.uk