Wednesday, 3 June 2015

The Referral: Stanmore Pain Management and Rehabilitation Programme, Part One


As you know I'm disabled, (you can read more about Ehlers-Danlos Syndrome HERE and the other challenges I face HERE) and managing pain is vital for any Spoonie. I've (almost) been on two Pain Management courses in the past.
  1. I was 18, I hadn't been diagnosed with anything, I was terrified. The Pain Management course was an inpatient stay in a Liverpool hospital for six weeks. I was surrounded by much older people and I wasn't receptive. When I found out that one of the therapies was water-based, I initially began to panic and flat-out refused. I'll leave that story for another time but basically, I have a fear of water. Since, the programme required the patients to swim I was denied participation. Hence my 'almost' course.
  2. Three hours, one day a week, for six weeks, I attended a patient-based pain programme. This was probably about four years ago and it was really beneficial. I was taught coping strategies, such as meditation, positive thinking and controlled breathing which I still implement now. I met some really lovely people (I was the youngest, as usual) and I found that because the advisors suffered with chronic pain, they had a real empathy for us.
At UCLH in the Rheumatology department there is a Hypermobility clinic; I've been there twice, first to see Professor Grahame in 2007 and next for an appointment with Dr Kazkaz in 2012. During the latter, Dr Kazkaz spoke to me about the Pain Management and Rehabilitation Programme at Stanmore hospital, I'd heard about it before and wanted to go but as I'm the Queen of Anxiety, I had my reservations. First of all, I'm horrible at geography and had no idea where Stanmore was; secondly, I didn't want to be away from home; and thirdly - what the hell would it entail?

The referral was sent off and I did what any 21st century patient would do, I googled. Everything I found online was really positive and I knew the programme would be beneficial for me.

Early 2013 I received an appointment for Stanmore (it's in Middlesex by the way, down south) but I was studying for my Masters and I couldn't get time off. The Rehab Programme required three weeks as an inpatient but it wasn't the right time for me. I was more than willing to go to rehab (yes, funny) as soon as I'd handed in my mammoth dissertation.

Once I left uni I called Stanmore to discuss my options and they informed me that I'd need a new referral as it had been over a year.

I made an appointment with my GP, told her all about the programme and how I thought it'd help me manage my pain and she agreed. She sent a letter the same week. It was that easy.

That was at the end of 2013. I went for my first assessment in March 2015.

My Stanmore (RNOH) journey is going to be a series on my blog over the next few months as I want to share the process, the emotions I go through, the therapy I have, etc.

If you have any questions, please get in touch.

Sarah x

2 comments:

  1. Good luck, I shall be following your journey!! ♥

    Amy | www.allthingsamy.co.uk

    ReplyDelete

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