Pregnancy Forums

Posted: 07 May 2008 at 9:23am | IP Logged

I am so angry at the moment with my pain clinic and the consultants. I filed a complaint with them a couple of months ago when I was told I would be treated in 12 weeks and then discovered noone had told admissions and I waited 16 weeks.

Needless to say I was furious. My SPD came back with a vengance the day before the 12 week mark. I was on crutches and using morphine within a week - which I have been left addicted to due to the amount I needed to manage my pain.

The letter back from the complaint, when it finally came, was a joke. In a 2 page letter, 3/4 of a page tells me about my history with injections and what they do - which I know! The next bit goes on to explain that the 12 week timeframe was a guideline that my consultant indicated to her secretary and I shouldnt have been told. It then goes to to explain that she wont do the injections in less than 12 weeks due to steroid build up. However I never asked for less than 12 weeks - I asked for 12/13 weeks so I wasnt in pain for a month. Nowhere does it explain why I waiting 16 weeks!

The end of the letter is a complete joke. The paragraph that really gets me reads:

'I fully understand and empathise with the frustration that you both feel, particually Mr Dilley seeing you in so much pain. Unfortunantely, there are no simple solutions. Pain is more than a sensory experience, and there are other elements to the pain experience, which cannot be addressed by injection therapy alone. The team in the Pain Clinic try to offer patients a bio-psycho-social approach to pain management, which may or may not incluse injection therapy.'

As you can see - its complete rubbish - I have never been offered Psycho or Social help so I dont know how they can state that!

I saw my GP yesterday to talk through my morphine addiction and how I am coming off it. She was wonderful and is allowing me to do this in my own time but with support and she is just providing me with what I ask for. She told me that the pain clinic should be managing my pain medication and she was shocked when I told her that they dealt with my injections but that was all. They are impossible to get hold of and my next clinic appt is August!

My consultant works privately too and if I had the money I would see him there (he works far more locally to me than the hospital I have to travel to at the moment) but I just cannot afford thousands of pounds and the treatment is going to be over the course of a number of years.

I'm not sure what my next move will be - If I have time I will write a letter to them explaining all this before I go - so I might have an answer by the time I return.

Posted: 08 May 2008 at 1:52pm | IP Logged

oh my god that is so frustrating, i have been referred to pain management  and it sound like the same thing. I am at the Walton centre, and i looked at the site and think it is similar, with psychologists etc, hope the letter works, can't believe you have to wait so long.

big hug for you

jackie X X

Posted: 08 May 2008 at 2:02pm | IP Logged

Hi Jackie

There seems to be nothing happening quickly for any of us.

I've had a 3mth wait for prelimarly (sp?) injections in beg of march, 3 mths wait for a clinic appiontment and then another 3mth plus wait to have them.

Every thing is such a long waiting game and i'm sure it all seems longer as we're in pain. I'm currently waiting for aids to arrive to help me around the house and i'm waiting for a appointment for an assessment but it's a 33wk wait plus so fight for everything you need but try and think ahead and get on the waggon you can always turn down the help later.

Posted: 09 May 2008 at 11:27am | IP Logged

i don't know if it would help but what about PALS? the patient advisory liason service. were they involved in your complaints process? you do not have to accept their response and can continue to follow this up. i certainly would be responding strongly if i was in the same position pointing out that

the role of any healthcare professional is to view the patient as a whole and to conduct any care utilising a hloistic approach at all times. while it may be felt that addressing the pain issue at dates convienient to them may be enough in their mindset for an acceptable delivery of care, it simply is not, as it is the patient and their family left to deal with the pain. therefore close negotiations with the patient re their needs would encourage a more acceptable management of needs as a start.at no point have i been offered any further support systems to assist my recovery and it is not sufficient that removal of pain is seen as having addressed the issues you raised. i would suggest that you consider putting me forward for the additional support to further supplement my care. this is strongly advised given that i now have to undergo a taper programme of morphine given that my needs have not been met by tha pain clinic.

i don't know if that would be of any use madz? also it's worth looking up what the mission statement of the clinic/pain services has and using that as a resource point in a letter. i suggest finding out if their is a specialist pain nurse you can use as a link and support too. she must be on the consultants team and might be of some use.

good luck and keep me posted.

sarah

Posted: 09 May 2008 at 11:47am | IP Logged

Wow Sarah that was worded lovely.

You obviously are passionate and willing to fight every step of the way which is fab!

I'm sure she'll find it helpful once she's gotten back from her rnr!