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 

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.


 
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. 

To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here      

Becoming a Patient Research Ambassador for the NIHR, Click here   

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here



Key Event Dates 2018, Click here     

Importance of an early diagnosis, Click here     

Taking Part in Clinical Research Trials, 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       


Raynaud's, Click here    


World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here        



RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception 

2017 Rare Disease Day Flashback  

More unmet clinical needs  

Rare Disease Day 2016



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. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



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: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

View video, here

Preamble - here 



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

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.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

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. Thank You. 
#HOPE 


 

Last Update: April 2018






 


 

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