Saturday, 7 April 2018

The Importance of a Multi Disciplinary Medical ‘Dream Team’ for Best Patient Care. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.

The Importance of a Multi Disciplinary 
Medical ‘Dream Team’ for Best Patient Care
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  


In a few weeks, it will be my 20th anniversary from first having heard those life changing words: 

‘You have scleroderma’, followed by, ‘and Raynaud’s phenomenon. There is no cure. Your disease is so aggressive that you are looking at 15months maximum. Forget being a barrister’.  

I have written about my initial diagnosis, as well as the full time job of my symptom management, previously.  

Prof Chris Denton and I, Sept 2017
  
November 2016, I was elated to hear the world scleroderma and Raynaud’s medical expert Professor Chris Denton tell me that my ‘skin is now cured from scleroderma'.

I am convinced that this ‘medical miracle’, (again, Professor Denton’s words), achievement, has been made possible by my being blessed to be under the care of a medical ‘dream team’, comprising of numerous medical professionals from different disciplines, with the superhuman Prof Denton being the medical expert lead.  
  
For the final day of my Scleroderma Awareness Month 2016 campaign, I discussed my medical dream team personnel in more detail.  
 
As we know, there are no two scleroderma patients who present with the same set of symptoms, and I am lucky to only have minimal internal organ involvement, so my ‘dream team’ is possibly not as big as the ‘dream team’ for other patients. 
 

  
 
Over here in the UK, I am eternally grateful for the National Health Service. The exceptional medical care and expertise which I have received, has, without doubt, kept me alive. 
  
 
I specifically chose the subject of research and best practice patient care for my Scleroderma Awareness Month 2017 campaign, Patient profiles, in recognition of the excellent medical care which I have received, showing that an expert specialist centre is crucial to achieve the best outcome for the patient. 
 
 
During the last month, I have been living the dream by being occupied more so, than normal, with having to attend medical appointments. I am extremely grateful that the majority of these can be, and are, carried out local to me. 
 
 


August 2017 outside my local hospital


This removes the immense physical exertion of me dragging my 'tin man' body to attend the expert centre Scleroderma Unit at The Royal Free Hospital in London, to only a few times a year. 

With my local NHS service providing my interim follow up care.  

Dr Sykes and I, August 2017


I am extremely grateful to Dr Sykes, Consultant Rheumatologist and the rheumatology team at my local hospital, Southport and District General Hospital

I am monitored by Dr Sykes in-between my appointments with Prof Denton, which has been essential to me managing my symptoms optimally.   
 
Furthermore, I will always remain very grateful to Dr Sykes for inviting me to present to, and educate the rheumatology new intake of junior doctors, about the diagnosis, over the course of several years.  
 
At that time, I was less comfortable with talking about the scleroderma and Raynaud’s fun snatcher. 

I would have to psyche myself up in my car prior to telling the junior doctors what had happened to me at their age (24). Upon returning to my car, I would wail for about half an hour.   


Now, I no longer wail, and have become a scleroderma and Raynaud’s parrot, living the dream.  

I am now 13 years immunosuppressant free. 

The only medication which I take is Bosentan. 

I have to attend the rheumatology clinic, (run by the lovely Denise and Eils, the rheumatology nurses), for bi-monthly blood tests to monitor my bosentan levels.  
 
Even now with healthy skin, having a blood test is an unpleasant experience. However, Michelle and the phlebotomists at the hospital are always understanding. 
 

I am also very grateful to Dominic Williams, tissue viability nurse,  for all of his help and advice on best care for my digital ulcers and calcinosis.  


Digital ulcer chronic inflammation, secondary to calcinosis, is deeply unpleasant’ 

~ D. Williams. 


Another valued member of my medical ‘dream team’ is Andrea, the pharmacist at the Outpatients Department. 
  


Andrea, the outpatients pharmacist, and I, August 2017


Andrea has been exceptional in obtaining tablets for me, which I can swallow, as my oesophagus has been damaged by scleroderma.   
 
Each year, to monitor any disease progression to my heart and lungs, I attend my local hospital for the relevant tests, namely ECHO and Lung function tests. Annual MOT


DAY 5  Scleroderma Awareness Month Campaign 2016.

thanks to Sarah 'me & Sclero' for her photo, used in the image

 
Huge thanks to Rachael and Mark for their continued patience with me during the tests!  


ECHO machine

Lung Function Testing Equipment


Another crucial subset of my medical dream team is my GP’s practice.   


Outside my GP surgery, Cumberland House, August 2017


In particular I am grateful to Dr Irvine and Dr Randall for their continued support with my ‘not so’ urgent, but still relevant, symptom management. 
 

I am extremely honoured to be able to share my patient expert experience by being a patient voice on the NHS England CRG group for rheumatology, helping with the UK guidelines for treatment, and UK guidelines for digital ulcer management.  
 


Living the dream, scleroderma style.  
 

Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates.   








I highlighted my 'dream team' members on DAY 30 of my 2016 Scleroderma Awareness Month Campaign. 


I detail my current dental involvement here.  




As well as, DAY 18 of my 2016 Scleroderma Awareness Month Campaign.

I am very grateful to my dental 'dream team', Dr Andrew Booth, Dentist; and Louise Doran, dental hygienist.  





An edited version of this article was published here, in my Column with Scleroderma News. 
August 2017. 




  

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.  


100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 

  

  
Last Update: Feb 2020.       



The Importance of a Multi Disciplinary 
Medical ‘Dream Team’ for Best Patient Care
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  



 


 



No comments:

Post a comment