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TOPIC: CRPS / RSD Lack of awareness

CRPS / RSD Lack of awareness 8 years 9 months ago #33342

  • sunny
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Hi there I am not really sure how this works, I suppose you look at my profile - am new to all of this. Anyway I developed CRPS after a crush injury in 2007. At that time there was even less recognition of it in the nhs as there is today. I will say though that as soon I got to an Occupational Therapy Unit, the course of my painful journey changed. My experience of the OT's in general was they really cared about me, not only physically, but psychologically. They also knew about CRPS and helped me to understand how important it was to maintain movement, and circulation to prevent the oedema from making this impossible. please if you have not seen OT's and you have CRPS it is a good positive experience. You can ask your GP for a referral.
Bye now
Sunny:)

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Re:CRPS / RSD Lack of awareness 8 years 9 months ago #33344

Some NHS Consultants Are Very Aware Of RSD/CRPS, Although Most Are Hand Surgeons & Pain Specialists.

Yeah It Wasn't Until Around 2007 Ish, When The NHS Website Started Publishing Guidelines On RSD/CRPS At: www.nhs.uk/Conditions/Complex-Regional-P...ages/Definition.aspx

Also Saldy Not Everyone Can See Occupational Therapists Within The NHS, G.P.'s, Or Social Services,

As It Can Still Be An Post Code Lottery, Like An Lot Of Specialized Areas & More.

It Took My 5 Years To Get CBT Counselling For My Clinical Depression & Took 7 - 8 Years For Group Counselling,

Were Some People In The Uk Get Counselling & Group Counselling Within 6 Months - 1 Year On The NHS,

Its All About Were You Live In The Uk.

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Re:CRPS / RSD Lack of awareness 8 years 9 months ago #33345

Hi Sunny

Welcome To Ablehere.Com

RSD/CRPS Is Slowly Being Recongized By The NHS & Uk Goverment: wristinstability.multiply.com/journal/item/112

Our ref: DE00000562247

Dear Mr Reynolds,

Thank you for your email of 4 November about reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS). I have been asked to reply.

I was very sorry to read that you suffer from this debilitating condition, which the Department recognises can have a devastating effect on the lives of the individual concerned and those around them.

The significance of chronic pain and the need for greater awareness of its impact was highlighted by the last Chief Medical Officer in his annual report for 2008, and there have been a number of developments since then including the publication of a clinical guideline by the National Institute for Health and Clinical Excellence on neuropathic pain.

There is no specific guidance in the UK on RSD/CRPS, but this is accepted by UK pain management specialists as a specific condition within the general area of chronic pain.

With regard to the lack of awareness of chronic pain issues, and RSD/CRPS in particular, among health professionals generally, the Chief Medical Officer’s report recommended including chronic pain training in the curricula of all healthcare professionals.

In theory, awareness of the principles of pain management already forms part of the basic education of both doctors and nurses, but a recent survey suggested that the time devoted to this topic is generally inadequate.

In the case of doctors, new arrangements will enable Medical Education England to work with the General Medical Council to ensure that its standards for the undergraduate medical curriculum fully reflect the needs of patients.

In the case of nursing, a new benchmark on the management of pain has been developed within the “Essence of Care” framework, which enables healthcare providers to monitor the quality of the nursing care they provide.

In the field of postgraduate training, you may be pleased to learn that the Royal College of General Practitioners (RCGPs) has made chronic pain one of its four clinical priorities for 2011-2013, and will appoint a clinical champion to lead a programme of work in this area.

The British Pain Society, patient groups such as those represented in the Chronic Pain Policy Coalition, and officials in the Department will be involved in encouraging development.

I hope this reply is helpful.

Yours sincerely,

Mike De La Harpe - Customer Service Centre - Department of Health

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Re:CRPS / RSD Lack of awareness 8 years 9 months ago #33354

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Hi there Scott I have looked at your pictures and read some of the posts. Boy you really have been through it and you certainly have done a lot of research. I wonder how you are now with the condition. I'm not really tuned in to how to read all the posts in chronological order yet.
I realise that it may be difficult to access Occupational therapy departments, but it is worth a try, especially for those whose condition is in the early stages. The College of Occupational therapists is a brilliant organisation in that they are very helpful and have a very good attitude. www.cot.co.uk and you can get their contact number and give them a call and try to find out where there is a department closest to where you live. Early intervention is very important.
Ok thats me :)
Sunny

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