Thursday, 13 April 2017

Expert Specialist Centers - Scleroderma, Raynaud's, Rare Disease Patients; Nicola Whitehill

SclerodermaUnit, The Royal Free Hospital, London


Attendance at an expert specialist center is an essential requirement for the best practice of care and treatment for the scleroderma raynaud’s patient, and for the rare disease patient, in general. 
 
The experience, knowledge and understanding of the specialist medical expert is not only of comfort to the patient, but essential, for an early diagnosis and optimum patient care and implementation of a best care pathway. 
An early diagnosis, the-importance-of-early-diagnosis is crucial to the scleroderma patient, in the hope that no life threatening irreversible damage presents, and that treatment options still remain a viable option.

I focussed on the relevant diagnostic tests for scleroderma in Day 5 of my Scleroderma Awareness Month series. Click here 



Day 6 focussed on the current ACR / EULAR scleroderma diagnosis guidelines, click
here 



Expert specialist centers offer a number of advantages to improve the rare disease patient experience, ranging from best patient care, to the production of patient registries for research purposes, to develop improved treatments and understanding of the cause.

Data collection can show commonalities seen in the patient population, providing an understanding as to disease progression, and a basis for research. These registries, must, out of necessity to the rare disease patient, be a part of a global research network.

Exchange of best practice globally, is paramount to the rare disease and scleroderma patient, where there is currently no cure, and where there is a large vacuum and medical need, for an improvement in treatments and disease modifying agents. Time is a luxury in the life of a rare disease, and particularly so, in the scleroderma, patient.

The Journal of Scleroderma and Related Disorders (JSRD) was launched at the 4th Systemic Sclerosis World Congress in Lisbon, 2016, hosted by the WorldSclerodermaFoundation. The 5th Systemic Sclerosis World Congress is to take place in Bordeaux, France, February 15-17 2018. For more information about this click here

The Journal of Scleroderma and Related Disorders is most welcome to the global scientific scleroderma community, as well as, the scleroderma global patient community, as, its contents demonstrate the global sharing and networking of scleroderma research. Read more click Vol 1, Number 1 and Vol 1 Number 2

To read my article ‘Why global collaboration is so important’ click here

Expert specialist centers also serve as a hub for patients to meet with others who are going through the same, similar experience, even though, no two scleroderma patients present with the exact same set of symptoms.   

To read more about World Scleroderma Day 29th June click here
 



The expert specialist center provides not only the best patient care, but also, an invaluable opportunity to share coping and management techniques, alleviating a little of the isolation experienced by the rare disease, scleroderma patient.

To view my article ‘Living the dream, being your own scleroderma raynaud’s patient advocate' click here



To view ‘Systemic Sclerosis – A Patient’s Perspective’, the presentation which I gave at the Bristish Society for Rheumatology BSR annual conference, in 2015, click here


To view the UK Scleroderma Treatment and Management Guidelines click here

The European Rare Diseases Organisation (EURORDIS) provides the following helpful criteria for the designation and evaluation of expert centers

‘Each country to establish a procedure to define and approve designation criteria and a transparent designation process:
 
  • Capacity to manage rare disease patients and provide expert advice; adhere to good practice guidelines for diagnosis and care
  • Patient access to a multidisciplinary team of experts (integrating medical, paramedical, psychological, and social needs)
  • Assure quality of care, participation in internal and external quality schemes, propose quality of care indicators
  • Proven expertise documented by annual volume of referrals, second opinions, publications, grants, teaching and training activities  
  •  Participation in research activities, data collection, clinical trials if applicable
     
  • Organisation of collaborations to assure the continuity of care between childhood, adolescence and adulthood, if relevant
  • Organisation of collaborations to assure the continuity of care between all stages of the disease’
An empowered, educated scleroderma patient, certainly makes for an easier scleroderma experience. An expert specialist center is at the nucleus of this. I focussed on the Scleroderma patient Healthcare DreamTeam on Day 30 of Scleroderma Awareness Month. Click here



I am eternally grateful to be a patient at the center of expertise, the scleroderma unit at the Royal Free Hospital in London, headed up by Professor Denton. This world class center of expertise, without a doubt, is a global leading light in the scleroderma global research field. For more info click www.royalfree.nhs.uk/services/services-a-z/scleroderma

I know that my success of still being around, to have now transformed into being a scleroderma parrot, is attributed to the world class healthcare and treatment which this expert center provides, as well as the superhuman medical expertise of Professor Denton.

Over the last two decades, I have taken part in several clinical trials conducted by the Scleroderma Unit, led by Prof Denton. To read more about this click here

Please DONATE to my Just Giving page which I have set up for financial donations to go direct to the Scleroderma Unit research fund, where 100% of your monies will be used for research purposes only. Thank You.


Living the dream, scleroderma style, hoping for a cure….

'My Skin is Cured From Scleroderma' 19 years post diagnosis, Nicola Whitehill, 30.11.16

This article is an update to that published by Scleroderma News

#SclerodermaFreeWorld #RaynaudsFreeWorld

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April 2017.


1 comment:

  1. Are there any of these centers in the States?

    ReplyDelete