Thursday 17 February 2011

"We've Been Told to Cut Down on Referrals"

My disability means that I face major problems sitting or standing, which is ever so slightly limiting when it comes to work. Since my previous employer kicked me out a couple of years ago I've been claiming benefits, JSA initially, ESA since this time last year.

Even though it took until the end of November for JCP to decide I should be in the ESA Work Related Activity Group, I imposed my own work-related activity on myself at the start of last year. Rather than waste my time on job applications that weren't going anywhere, I would focus on trying to improve the management of my disability. More specifically, I'd push to get some sort of diagnosis on how my new c-spine problems are going to develop and interact with my existing lumbar-spine/pelvic issues, so that if a prospective employers asks 'So what does this mean, how will it affect your work in the future?' I will have a better answer than "Um, dunno".

So I have spent the last year having bone scans and the like and trying to get my ortho/rheumy guy to understand I need a prognosis for the whole body, not just one bit -- the whole hip-bone's connected to the thigh-bone thing. It didn't help when the bone scan showed up signs of osteoarthritis setting in to wrist, hip and knees - more questions - but I finally got through to him, only to be told "You're right, you need someone to look at your whole spine, but we don't have anyone here who can do that." That was in December and I was sent away to get my GP to refer me to a spinal surgeon, with the promise of a letter to her explaining what was needed.

When I first went to see my GP, the letter hadn't arrived, so I said I'd make a later appointment, which was today. Now it was bad enough that two months after the hospital appointment the letter from rheumatology still hasn't arrived (and apparently my GP has just filed a formal complaint over this, because two months is far from the worst delay from that department), and I'm fighting to get her to understand why the referral is needed without the explanation in the letter, but then she said something that took my breath away:

"We've been told to cut down on referrals"

So much for ConDem promises that NHS cuts wouldn't hit clinical services, but the impact stretches beyond the NHS and access to treatment and into the disability benefits arena.

The government is on a jihad to get disability benefit claimants into work. For many of us, people like me, the only way we will be able to convince an employer to take us on is if we can show that our chronic, work-limiting conditions are understood and under control. That's a much more difficult task than non-disabled people generally realise. For many of us it will need referrals to orthopaedics, or rheumatology, or physiotherapy, or whoever, because our disabilities require specialist knowledge beyond that GPs can offer. But if those same GPs who arrange the referrals for us are being pressurized by their Primary Care Trusts to cut down on referrals, because the PCTs in turn are being pressurized by government cuts, then it is going to be the people with non-urgent, chronic conditions -- disabled people, who find themselves sacrificed for party-political agendas.

So on the one hand the government is pressurizing me to undertake Work Related Activity to get me off benefit, and with the other its cuts are taking away the opportunity for me to do precisely that.

Illogic much?


  1. Same with mental health services: apparently the treatment that might help me would be available only as a private resource.

  2. I'm completely floored by this but not all that surprised. I've asked for a referral to a rheumy since "managing pain" is a big buzzword with fibro - even though the lupus group feels (off the record) I've probably got lupus. But no, apparently I "turned down the management clinic" - I was in hospital at the time - so they think this is a good reason to not refer me on. But the real issue I think is they are being not only told not to refer on, but also are being offered bonuses if they don't. I'm utterly staggered that my fate is being left in the hands of someone who admits they have no idea how to treat my condition.

  3. This sounds so much like my own GP it's scary. I was told by my gyne consultant that as my bladder and bowel function had gotten worse after the myomectomy he performed, that he strongly wanted me to be referred back to my neurosurgeon. He said he'd send a letter to my GP.

    I have spina bifida with a tethered cord between L1-L5 which can't be operated on as my nerves are enmeshed in scar tissue from an earlier operation. I just used to suffer with chronic pain and numbness in both my legs and back, but this has now crept up past my backside and other places I'd rather be able to still feel along with incontinence and chronic retention, not to mention excruciating pain.

    My GP gave me a 10 minute lecture on how the surgery had no money thanks to the government and that in their staff meeting had decided that they had to cut back on referrals and ask patients to change to cheaper medicines. She told me that she didn't think it necessary for me to speak to my neuro and basically told me to "just get on with things". She asked if I knew how much I was costing the NHS... I was so upset at this point I actually said, "I am so sorry for being born disabled."

    A few weeks later I did get the referral, but only after my GP had written a condescending letter to my neurosurgeon and received the letter from my Gyne.