Thursday, 21 August 2014

well that was quick

In very fast reply to my last email/post I had an email from the head of the trust saying that someone from the department would phone me. I responded saying (in summary) that words were all very well but they wouldn't solve the issues the department had.

Then the orthotics manager phoned me - from the PALS office, where she had come in on her day off - and told me that they were chasing the Challico boots daily and were going to try to have them here next week. She then told me that the Orthotist had explained to me in the appointment where the boots and calipers were decided on that Piedro were taking up to six weeks to come when I chose them. I replied that this was not the case and that we were shown a page from a catalogue with three colours of boots on it and N chose the hot pink ones. At no point did anyone say there were other kinds available or that there was a ridiculous lead time - in fact, I had asked whether there were others available because my eye had been caught by some purple ones on the following page. She persisted that it had been explained to me. I have sent a further email to her reiterating that it wasn't. We are now waiting to see what happens next week.

I feel harangued. The orthotics manager has clearly been on some sort of training course where she has been told that including people's names frequently in conversation is a good communication tool. She spent a lot of time saying things like 'I feel I have to disagree with you there' and 'that is not what happened' and 'I have to correct you on that point' and asking 'who exactly said that to you?' all in an pretty confrontational fashion. Her technique is to keep talking and talk over you. I told her that anecdotally, we are not the only family who is unhappy with orthotics; and she responded by asking me the names of these people and telling me that I should get them to put a complaint to her so that she can put things right.

In the end I snapped and turned it back on to her, not letting HER get a word in edgeways for a couple of minutes and telling her that at the end of the day, it is the responsibility of her department to sort out N's boots and they have failed to do so.

Things I didn't say included the fact that it's clear her entire department has a culture of arse-covering and are prepared to lie to make sure that trouble slides off them; and that I don't appreciate being effectively told that I am not telling the truth.

I came off the phone with adrenaline shakes of an extreme nature and I am so very, very fed up.



no orthotics at all, in fact


Continuing Orthotics trauma. Luckily N has a spanking new powered chair that she is whizzing about in, that is making up a bit for her inability to stay on her feet for long. But it's a different thing, for a different reason - she needs to be on her feet.

Dear <head of the local NHS Trust>
As a follow-up to my email to you dated 1st August 2014, I continue to be extremely unhappy with the service we are receiving from Orthotics for my daughter.

Up until this week I have been happy to remain outcome focused and to just be grateful that someone in Orthotics was communicating with us. I appreciate that N is a complex case and that there is no 'off the shelf' solution. However, I have now reached the point were I have serious reservations about the Orthotics department as a whole. I feel that we have been repeatedly fobbed off; given unrealistic timescales simply to get us out of the department and off the phone; told on one hand by the Orthotist that there were no free fitting appointment for modified splints and then later told by <the orthotics manager> that this was not the case and that N should have been fitted in - with the blame being laid on the Orthotist rather than the appointment system; and even given clinical advice by the administrative staff over the phone. It appears to me that the department is at best treading water and at worst detrimental to the children who require orthotic support - despite the best efforts of the Orthotists and Physiotherapists who appear to be doing the best job they can within an obstructive and chaotic framework.
My child has now been without ankle support since the middle of the summer term. This means that she has not been able to walk. After our last appointment and subsequent meeting with <the department director>, despite his hope that N's boots and calipers would be available in two to four weeks, we took matters in to our own hands and travelled to Exeter to have some soft boots hand-made for N that give a modicum of ankle support. These cost us close to £100 in total and have meant that we have had to make choices about where that money came from. We are lucky that we have the option to budget for it and to easily travel. N still can't walk long distances with them; but they are better than nothing. 
I chased Orthotics on Monday evening and left a message for <the orthotics manager>, as they had failed to contact me with any information about the boots/calipers arrival. It transpires that both <the orthotics manager> and <the orthotics director> are off this week, however, I received a call back from someone in the department and I spoke to <the orthotics's director>'s PA and to PALS. PALS liaised with <the orthotics manager>, who is apparently picking her emails up from home. <the orthotics manager> spoke to the Piedro account manager, who said that Piedro were now refusing to give a date for the boots.

I am unclear why Orthotics were able to say three weeks ago that they were hoping the boots would be in around 15th August and the lastest they would be in was 1st September if now it transpires that Piedro are not giving delivery dates. It seems unlikely to me that Piedro were giving dates three weeks ago if they are unable to do so now. 
<the orthotics manager> has now arranged a delivery of Challico boots to Peacocks, which are alleged to take ten to fourteen days to come in and then a few hours to be modified by Peacocks to take the calipers. Again, I am confused as to why Challico are now being proposed as a solution, as when initially when the AFO boots and calipers were proposed we were told that Piedro were the only boots that were suitable for modification to take the calipers.
The Orthotics Department at Musgrove Park Hospital is a shambles. We are not the only family that is being let down; but not all the families are as articulate and persistent as we are and I am pretty sure others are slipping through the net. If <the orthotics manager> and <the orthotics director> have been in place for eighteen months as he told us in our meeting with him, I would expect them to have put their stamp on the department by now. If this is the case, then the Trust has the wrong people in post.

I would like to know what the Trust is doing to ensure improvement.



Tuesday, 12 August 2014

flashback

I guess have always used my blog-du-jour to write about stuff that's bothering me. I find that if I write things down, it takes the emotional charge out of whatever it is and it helps me get over myself and move on. So today, I'm writing for me. Not for N, or for people who might read my experiences in the future, or for B, or for anyone else. For me. And I am revisiting something that I have written about in the past that I thought I had done with.

B and I have been having some counselling to help us get a grip on all the stuff that's going on with N. We had a session this afternoon and one of the things that came up was the fact that I find it really difficult to deal with not being listened to.

We were thrashing this out in the context of our relationship with each other and with the kids; and all of a sudden, all I could think about was being date-raped when I was nineteen. Twenty-five years ago.

All I could see in my head was my bedroom at university. My bed was in place against the wall, the cramped sink was in one corner and the desk in the other. I could feel the weight of the chap on top of me. I could hear my voice saying 'I don't think this is a good idea' and him saying 'Don't worry, it won't take long'. And I could feel the physical sensation of him between my legs and the way he moved and the wetness on me and the complete and utter sense of bewilderment that I felt whilst all this was happening, because surely, 'I don't think this is a good idea' is a polite way of saying 'Would you mind awfully taking your penis a little further away from me than it is at present?' and he had completely ignored it.

I couldn't get the images out of my head. They looped again and again for the last twenty minutes of the session this afternoon and then more in car coming home. It's only now, sat on my own sofa in my own house, safe in the present, that I am managing to batten down the thoughts and images.

Sitting here curled on the sofa, with B with his hand on my foot and a hand on my arm, I have cried a few tears and suddenly realised that everything I ever thought I knew is skewed.

For years I have had difficulty trusting people. Particularly men. I dislike being touched by people I don't know very well. I have no patience with lying or with people pretending to be something they are not. I think these are probably fairly standard reactions to being a rape survivor.

On top of that, though, for years, if something or someone hurt me really badly, my mantra would be 'It doesn't matter, it doesn't matter, it really doesn't matter'. I have had really low self esteem and I have self-harmed, scratching or cutting my arms when I felt at my lowest. I had a long period where I found it really difficult to engage emotionally with partners and went out of my way to have brief anonymous encounters.

My rapist was someone I thought I knew well and who I was in love with. Not only did he not stop when I voiced my discomfort, he also told everyone in our social circle at home that we had slept together and that 'it didn't mean anything'. And he also told me that he didn't want me as a girlfriend because I wasn't the sort of person who would fit in with the people he wanted to hang out with at university.

He was a nobber, in retrospect.

But at the time, far from not mattering, it mattered very much. So much that I have carried those coping mechanisms with me for more than two decades.

So now I say, yes, it did matter. It did matter that he didn't listen to me. It did matter that he did something I didn't want. And it did matter to me that he was more concerned with his social standing than he was with my feelings. He hurt me very badly in a number of ways and I don't think I have ever really given myself the space to acknowledge that before. If I have done, it clearly wasn't enough.

So this is me, putting down a marker for myself.


Wednesday, 6 August 2014

need a bigger boat

I'm really miserable about the amount of special kit we have to make room for. It's all useful stuff, but we need a bigger house to fit it all in. Or a wormhole or something:
  • Standing frame (to be strapped in to for an hour or so a day to give her good posture and hamstring stretch)
  • Specialist Davros seat with torso support (to do stuff like cooking or sitting at the dining table)
  • Small chair with torso support (to sit at the little table)
  • Peapod beanbag with torso support (to chill out in when watching TV)
  • Bugzi electric wheelchair
  • Manual buggy/wheelchair
  • Inflatable 'paddling pool' to go around the bed (so she doesn't fall out)
  • Electric hospital bed that goes up and down (to save our backs and take the other kit)
  • Sleep system, to go on the bed and provide support as she sleeps
  • Suction pump (in case she chokes on either food or her own secretions)
  • Kaye Walker walking frame (so she can walk)
  • Toilet frame
  • Electric bath seat (goes up and down and gives her seated support in the bath)
  • Bathroom step
  • General purpose step
  • Ramp out in to the conservatory
  • Three months supply of nappies (delivered quarterly)
  • A gross of Fortini Multifibre feeds, syringes and tubes (delivered monthly)
  • Spare mini button that needs to go everywhere with her in case her button comes out and she has to go to A&E
  • Carrot car seat (to use when she is going somewhere in a non-wheelchair-accessible vehicle)
All these things make our lives easier and we've got enough space, really. But today, there is school-holiday detrius covering the living room, glitter glue ground in to the rug, polystyrene eyeballs all over the room and chaos in the kitchen as B keeps the children occupied (very successfully) for an hour making pizza for lunch. And there is the old mattress on the lawn waiting to go to the tip; and all the old skanky bedding needing bundling up to dispose of ... and so on and so on.

I am really hoping that Make A Wish come through before the end of the school holidays and sort us out a break somewhere.

With babysitting.

Tuesday, 5 August 2014

crazy feet

So, after finally seeing my arse with Orthotics on Thursday, I emailed PALS and Jo Cuddon, the head of the Taunton and Somerset NHS Foundation Trust, and cc'd Orthotics in.

Yesterday we had our appointment and whilst we were in it, I had a phone call from Gervaise Khan-Davis, the Directorate Manager. He met us after our appointment and apologised and told us what they had in place going forward - the lead time on her boots has gone down from six-to-eight weeks to 'hopefully two'. I pointed out that it was only because I was articulate and bolshy that this had happened and I asked what happened to families where parents weren't prepared to make a fuss. He didn't really have an answer, but it was clear that they are aware that the department isn't up to scratch.

I should add, I have no issue with the Orthotists - I can't speak highly enough of the two that we have seen, despite one of them being relatively inexperienced. It's the system.

So, we have night splints.

She doesn't want to wear them at night.

The night-splint-wearing
Cat Princess. Doh.
She and I put them on last night at bedtime - which is a rigmarole in itself because of the criss-cross velcro - and then she insisted on them coming off again before she actually got in to bed. The threat of two hours screaming was enough to make me take them off when she asked.

However, she will wear them in the day and because she can't actually walk at the moment, that's okay - they are aren't robust enough to walk on.

In the interim, I also heard from PALS, the Patient Liaison people. Apparently a 'formal complaint' can take up to twenty eight days to get a response; so instead, I asked them to keep in touch with Orthotics for us regarding the boots.

The whole thing is extremely frustrating and I now know of three different families who are having similar issues on one level or another with the Orthotics Department at Musgrove Park. If you are one of them, I suggest you email the head of the trust, Jo Cubben (Jo.Cubben@tst.nhs.uk) and/or the Directorate Manager of the Musculoskeletal Directorate, Gervaise Khan-Davis (Gervaise.Khan-Davis@tst.nhs.uk) and include PALS (pals@tst.nhs.uk). I also included the Orthotics department (SurgicalOrthoticsEnquiries@tst.nhs.uk) and the Physiotherapy Department (samantha.reid@sompar.nhs.uk) as cc's.

I hate the idea that there are children who aren't getting what they need because their parents are too knackered or overwhelmed to make a fuss. Perhaps if enough of us who are able, do so, there will be a system change.