It’s a ‘dog eat dog’ world in charity, I tell ya. Sitting here nursing my fingers ravaged by a frightened squirrel I wanted to help find its way out of my fireplace after it came down the chimney brought it home again. It’s a thankless world!

But seriously, I am often surprised at how much rivalry and competition and positioning there is. I can’t usually be bothered with this. There is a quote from this article that hangs over my desk: charities are (or should strive to be)

genuinely diverse – anarchic even; truly organic; intrinsically cooperative; wholly people centred; open hearted and generous spirited; trustful and widely trusted; often informal and largely unbureaucratic; inclusive and non-discriminatory (apart from a moral bias); mutual in method and communal in attitude; egalitarian in the profound sense of valuing all equally; collaborative rather than competitive; selfless rather than selfish; giving centred.

Perhaps this attitude is more in line with my character than seeing each charity as a ruthless business, competing with others and jostling for market share; perhaps it is because BSA is a niche player and has no real competition whereas a donkey sanctuary, say, or a cancer charity, often does.

But I’d like to think it’s also a rational decision - being a charity that’s not “trustful and widely trusted” has costs attached to it. I know of charities like that, and in my experience opportunities that do come along get shared with charities that are trustful and trusted - and withheld from those that don’t.

Just writing the final draft of the new Strategic Plan. I wonder whether I can get this worked into it somehow.

Wednesday morning. The auditor is coming in at short notice to pore over our books. Stressful times.

Our payroll person informs me that inadvertently he’s arranged for me to get paid ten times my normal salary. I personally can’t quite see the problem, to be honest; but he seems to feel strongly that this is something that might need rectifying. So I try to phone the bank (HSBC, in case you were wondering) to stop the payment go through.

First two attempts, waiting in line with some jingle in the background, someone picking up “at the HSBC Centre in Swansea in the UK” as they kindly point out, they take me through security (”if you don’t know the answers, please do not guess because if you do get it wrong we may not be able to help you”) and I describe the problem, in as many variations as I can; they then say “I’ll put you through to the right person” and a few seconds later a rather menacing, mechanical voice says “Please hang up. Please hang up…” and the line goes dead.

So, I phone a third time and get quite shirty. With a stammer. The person promises me he won’t hang up on me this time. Takes me, guess what!, through security. Yes, yes, I know, I mustn’t guess the answers, I heard it before. Never mind - he has a script to work to.

I get put through to some nice lady who’s apparently neither in Swansea nor in the UK. I explain the situation; she asks for all kind of details, who the payment is from, which agency it is going through, what system is being used; information I don’t have as the payments are handled by an outside agency.

So I take a deep breath and try the common sense approach. “Look”, I say, “all you have to do is look at the payments from last month - these are our regular salary payments”. She says this is not how they do things. Not quite “computer says ‘no’”, but getting there…

In the end, it transpires I can only stop the payment if I pledge them the life of my firstborn. Or words to that effect. So, with steam coming out of my ears, yet strangely fluent, I tell her where she can get off. I will now get paid a HUGE amount on Monday, and repay an almost equally HUGE amount on the same day. Watch out for the credit crunch by about Monday lunchtime. If there’s no credit crunch by lunchtime I’ll have taken the money and am off to the Bahamas.

Had a whinge to one of my trustees about this over lunch. “Write about it in your blog, you’ll feel so much better”. Strangely enough, I do….

On the back of this week’s article in the Daily Mail (dreadful headline, some dubious quotes allegedly from yours truly) I had an interview lined up with Radio Europe. Unless you’re an ex-pat living on the Costas, there’s no reason you should have heard of this station.

It’s their weekly health programme and they appear to have a resident GP. The presenter asked him: “So, what options are there for people who stammer” and he replied “well, if we are talking about very young children, speech therapy can have very good results; but if the person is older or the stammer is very severe, then we need to look at alternatives” and I felt like shaking him and saying “Like, what?”.

Is there a special training module for GPs entitled “How to be resistent to new information”, or “How to always appear all-knowing even when talking rubbish”? Perhaps, just as we all get the government we deserve, do we get the GPs we deserve? Is it our fault as consumers? Do we expect them to know everything? Would our world end if a GP told us “I don’t actually know, but I’ll ask the audience/take 50:50/phone a friend?”

Anyway, I’m calming down now. Re the actual interview and the Speech Easy device - we are getting more and more feedback from people who found it useful but who tend to use the device, if at all, quite judiciously. No wall-to-wall, all-day usage but application in certain situations like important telephone calls, or giving a presentation etc. Natalie Riley’s mum, too, is quoted in the Mail article “Even when she doesn’t wear it, she is 80 per cent better than she was…” and it would be interesting to know which situations Natalie chooses to wear the device and when (and why) she’d rather go without.

I heard about this research on the radio today - researchers in Berlin have found that our brains have already made up our minds for us well in advance of our own, conscious decision-making. A bit scary in many respects.

What’s the impact this has on stammering? Do we already know in advance when we are going to speak and what we are going to say, without being consciously aware of it? Can our brains adjust - in this unconscious knowledge - and anticipate where we will have problems, build up anticipatory struggle and launch into a full-blown block by the time we are consciously aware of having made the decision to speak?

Just thinking about this is giving me a headache at 6pm on a Monday evening. Somehow, I knew I was going to write that!

… at crack o’sparrow fart, as they say. The sun’s rising in Hackney and the birds are starting to cough. But at least I don’t actually have to run the Marathon, like Mark Limbert will do in about three hours from now.

Quick weather check: glorious sunshine but that’s how it started Friday and Saturday, and then we had some massive showers from early afternoon. Fingers crossed!

The banner is ready, the balloons will be inflated; do we stammer after inhaling Helium? Time to find out. If you get live TV coverage, try and watch our for runner with the number 33451 and the BSA gathering at around mile 23!

PS: after a cold and rainy day, it was all worth it:

I’ve just been to another next meeting of the Bercow review. One of the striking things is that everyone on the review panel is clear in their mind that one of the reasons why children do not get the service they need is that providers are unclear about who has the responsibility of paying for these services. The result is that both the education service and the health service are lobbing responsibility back and forth and the child, caught up in this dispute, falls through the net. A field day for the lawyers…

What to do about it? Government seems to think that joint commissioning by health and education is the answer; yet we have found that the commissioners from both sides sometimes have never actually met. This whole issue of commissioning of services is immensely complex and I am impressed with the insights of other members on the panel - I must say I am grateful I don’t get asked for detailed comment!

I am so pleased that the main themes identified so far, early identification, more public awareness, equity of service (no more postcode lottery), and joint working between education and health chime with everything the BSA has been doing in the past. Looks like we’re not barking up the wrong trees!

The other day there was a telephone call on our answer machine. It was Peter Bennett’s wife informing us that he’d passed away in December.

I have many good memories of Peter, as will many BSA members from the early days. Peter used to chair the self-help group in London’s Finsbury Health Centre. This was, in the early nineties, my first experience of stammering self-help. It was a disparate group and the two senior members, Richard and Peter, had decided views about the importance and pre-eminence of the psychological aspects of stammering, certainly in adults.

Peter was an intense and serious debater. He thought long and hard about views that others brought to the table. I suspect BSA’s rather agnostic views about the nature and causes of stammering were sometimes a source of frustration to him.

The news of his passing made me think whether we can ever truly be aware of the impact we have on other people’s lives, for example by involving ourselves in voluntary activity. Would my life have been different if I haven’t had the opportunity to take him up on what he offered by organising his group? It most certainly would have been. Would I have had the courage to start therapy? Even if, would it have been successful without the background discussions in the group? Certainly, without therapy, I would not have made the step towards working for the BSA (or AFS, as it then was).

In the end I left the group after I started working for the BSA - by that time I had a lot of stammering work in my life and it felt right to keep the evenings free. But I am surprised how clear my memories of the group are, even after 15 years, and especially of Peter.

I usually cycle to work. At the moment, the bike need a good service: I believe the back brakes are touching the tyre which makes cycling harder. Even so, it only takes me about ten minutes to get into work this way.

While gently cycling into work this morning, I thought about Mark Limbert  - a BSA member who’s preparing to run in the London Marathon this year, on behalf of the BSA. The thought of cycling 26 miles, never mind running it, is enough to make me break out in a cold sweat.

BSA is organising a get together with a big banner and balloons at the London Marathon on April 13th to cheer Mark on as he passes the 23rd mile. Do come along, if you can! I wonder whether he’ll be sufficiently compos mentis by then to even notice us? Mark’s number is 33451 and he’ll be wearing a specially designed BSA t-shirt, in case you’re watching this on telly.

BSA has been trying to secure a place on the Marathon for many years - it’s basically a stitch-up amongst the large charities with sizeable events fundraising teams. While large charities can have a permanent contingent of dozens of places each year, smaller ones like the BSA can only get one once in every five years - max. All the more important to make this one count and cheer Mark to the rafters!

Today sees the launch of the interim report of the Bercow review on the needs of children with speech, language and communication needs. It’s been a difficult process, with even the final draft of the report last week attracting much comment from the members of the review panel last week.

Just had a quick glance at the Executive Summary - and I must say I am rather pleased. The five main issues highlighted are

1. Communication is crucial - it’s not only a key life skill, but also a fundamental human right.
2. Early identification and intervention are essential - something the BSA has been banging on about for well over a decade now. In many cases of speech, language and communication needs, early intervention can alleviate problems in later life; with stammering, it can help to completely overcome the problem.
3. a continuum of services, designed around the family is needed: many of our children might experience good service at pre-school level, only to see them fall away at school age, over the age of seven, or eleven. Any kind of structured service usually ends when leaving full-time education. Others will not get the required services when they are very young, as some speech therapy departments still will not accept referrals until the child is seven.
4. joint working is critical: there must be joined-up thinking between the health services (the health visitors and GPs who might refer the children) and the speech therapy services, with education services such as early years provision, and schools. The law makes provision for and requires this but the report makes it clear that - as we know from what parents are telling us - it’s just not happening out there. Very often there’s a ping-pong game going on where health expects education to fund the service for a particular child and vice versa - and the parent and their child are left in the middle while everyone denies responsibility.
5. there is a postcode lottery in terms of access to services - something the report describes as “the current system is characterised by high variability and a lack of equity“; certainly in terms of NHS provision we know of trusts with an excellent service, with no waiting lists for pre-school children to others where the waiting time can be up to 2 years; or where no service is provided other than ‘advice and review’.

As this is merely the interim report, this document is flagging up areas of concern which the review will be working on over the next few months, and come up with recommendations. John Bercow has said that, after the report has been published in July 2008 he would wish to return to it in about a year’s time to see what progress has been made.

Looking at this press release from the DCSF last night on the use of phonics in the teaching of reading and writing I was struck again at how unlikely it was that the needs of children who stammer, or indeed any children with speech impairments, would have been considered when a decision was made on the introduction of phonic methods. I would have thought when producing strategies like Letters and Sounds, this would be obvious. One example from teachers practice reads

Teacher: D – D – D – D Darius.

Children: D – D Darius.

Teacher: Did you look at yourself in the mirror saying that? D – D - Darius.

Children: D – D Darius.

Teacher: D – D – doughnut.

Children: D – D – doughnut.

Teacher: D – D – delicious.

Children: D – D – delicious.

Teacher: Delicious doughnut.

Children: Delicious doughnut.

Teacher: Can you remember? Delicious doughnut?

Children: Delicious doughnut.

Another incidence was a quote from a report on speech and language therapy in prison. I recall talking to a researcher who’s been working in Young Offenders Institution. Research has shown that about two out of three of these young men have serious communication impairments. When a young man enters prison, he will be assessed for all sorts of issues and conditions that might make rehabilitation less and re-offending and becoming a danger to themselves and others more likely. But the state of their communication skills, whether or not there is a problem with talking (or comprehension), is not assessed, even though it is arguably the most common problem.

It’s not as if assessing the impact of communication impairments such as stammering might have been considered and then dismissed. What is really depressing is that this simply does not occur to anyone. Yet another example (the third in two days!) - research grants by the NIHR, the research arm of the NHS, categorise research under various headings such as cardiovascular, mental health, eye, ear etc - but nothing on stammering or communication impairment. Are we ‘mental health’? ‘Oral health’? ‘Neurology’? ‘Congenital disorder’? Or forever damned to be categorised as ‘Other‘?