Friday, 28 September 2018

Happy 70th Birthday to the NHS. Thank You, for keeping me alive. Raynaud's, Scleroderma: Rare Autoimmune Disease.

 Happy 70th Birthday to the NHS.

Happy 70th Birthday to the NHS. Thank You, for keeping me alive.

On the 5th July 2018, over here in the UK, the National Health Service (NHS), celebrated its 70th year from when it was started, by the then Health Secretary, Nye Bevan.

‘For the first time, hospitals, doctors, nurses, pharmacists, opticians and dentists were brought together under one umbrella to provide services for free at the point of delivery’. History

I am eternally grateful to the NHS for keeping me alive, and, for the excellent standard of care, which I continue to receive.

I truly believe that without the NHS, I would not have survived the aggressive onset and progression of disease which I experienced during my diagnosis, and the following years, until my disease activity became stable.

The Royal Free Hospital, 27.9.17


Furthermore, I remain overjoyed that my ‘skin is cured from scleroderma’, having not been able to stretch my arms, in 1997, due to the extreme skin tightness.  

However, my daily reality is that it is a full time job for me to manage my symptoms. 

Which, even on the hottest of summer days, brings along many challenges, as well as, Raynaud’s attacks, due to any temperature decrease, regardless of the resulting temperature being ‘warm’. 

Hottest day of 2013
Thankfully, my symptoms are currently stable. I have regular monitoring appointments. 

These include annual heart and lung tests. which are carried out at my local hospital, here in Southport.

I am now living with the damage which, the disease at its most active, caused.  

Ultimately, I know that I am a lucky scleroderma survivor. Even though, the disease has removed many facets of my life which I enjoyed, as well as, forcing my inner ‘Bond Girl’ to abscond into oblivion. 

However, due to my early-ish diagnosis, followed up by the world class care I received, and, continue to receive from the Scleroderma Unit at The Royal Free Hospital, combined with my local NHS providers, here I am, living the dream as a ‘scleroderma parrot’- obsessed with the dream of a Scleroderma Free World, along with a Raynaud’s Free World, becoming a reality.

My experience prompted me to profile patients from around the world, for my Scleroderma Awareness Month 2017 and 2018 campaigns. INDEX



I have detailed more about my patient experience and journey, on Day 12 of my global patient profiles campaign, for Scleroderma Awareness Month 2018.  

I am extremely grateful to all of the patients who have kindly shared their experience for awareness purposes, as well as, I owe huge thanks to the families of the patients whom, sadly, have died from the disease.

The conclusions of which, showed that for optimum patient care, 3 hallmarks preside:
Where, investment in medical research is crucial, to improve the day to day reality, as well as, the long term outlook for the entire global scleroderma community.

Although as scleroderma patients we are relatively few in number, 2.5 million worldwide, the small sample of patients included within my global patients profile campaign show that, there are many unmet clinical needs, which patients have in common: 

 

CALCINOSIS, Click here 
 

GUM RECESSION, TOOTH EXTRACTS, Click here  

 

SOFT TISSUE, ULCERS, Click here   

 

TELANGIECTASIA, Click here  

 

SCLERODACTYL HANDS, Click here    

 

INVISIBLE DISABILITY, Click here  

 

RAYNAUD'S, Click here  

 

GASTROINTESTINAL, Click here
 

Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.  
 
An investment in medical research will most certainly improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.


In 2015, I was honoured to become a patient voice on the NHS England advisory group for Specialised Rheumatology.

In this role, I am totally blown away by the commitment and dedication shown by the medics involved, to improving the service which the NHS has to offer in this medical speciality.

I feel particularly honoured to have been a patient voice, on the NHS England policy for the management of digital ulcers, published July 2015. 
Fellow patient Miss Universe, me, Christine and Lauren from NIHR team


I am also very honoured to have become a Patient Research Ambassador for the National Institute of Health Research, the research side to the NHS. Video.

Due to the systemic involvement of my diffuse scleroderma, I am known to many of the different medical specialities included within the NHS umbrella.

For optimum best practice and care, a medical ‘dream team’ is paramount, with an expert specialist as the clinical lead. 


I am truly grateful for my medical ‘dream team’, made possible and available to me, by the world class leading healthcare system, the NHS.  

Prof Denton and I, Sept 2017


Dr Kevin Howell (Raynaud's world trailblazer)
Dr Sykes, Consultant Rheumatologist Southport Hospital, August 2017.
Andrea, Southport Hospital Pharmacist, August 2017

Thank You, NHS. 
Happy 70th Birthday.  


Living the dream, scleroderma style.         
          

For latest updates follow:  
 
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
Living the dream, scleroderma style. 
  
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.
#HOPE 
 

   
#SclerodermaFreeWorld  #RaynaudsFreeWorld 


An edited version of this article, Click here, was published in my Column with Scleroderma News. July 2018.

To read my articles: 

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     

OCTOBER: 
 

Raynaud's, Click here   
This year, 2018, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Sept 2017

Prof Chris Denton and I, Sept 2017
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. 
I am truly humbled and inspired by their work ethic. 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 diagnosing doctor, that I was looking at a 15month prognosis. 
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   


Global Patient Profiles Campaign 2018 Video, Click here 
2018 Scleroderma Awareness Raising and Medical Research, Click here  

Importance of Medical Research and Awareness Raising, Click here 
NIHR Video: 'My Experience of Clinical Trials', Click here   
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here 
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here  
Scleroderma Awareness Month Flashback 2016, Click here  
My 2016 Scleroderma Awareness Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here  
March 2018 Autoimmune Disease Awareness Month, 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

To view my article 'Why Global Collaboration is Important', Click here  
 

PLEASE DONATE here   

#SclerodermaFreeWorld #RaynaudsFreeWorld 

Sept 2018.

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