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’.
‘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.
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.
 |
| 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.
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 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.
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 has been exceptional in obtaining tablets for me, which I can swallow, as my oesophagus has been damaged by scleroderma.
 |
| 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.
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.
 |
| 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:
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: 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
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.
#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.
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.
provides the brightest light,
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:
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
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.
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.
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
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
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