Say something

saysomething

My uncle gave me the best advice of my life one night as we were drinking pints of beer in my dad’s old pub. It was not long after he died and my siblings and I had a phase where we shunned the bright lights of the city centre bars for this old man’s pub with its sticky floors and no-amount-of-Flash- is-blasting-the-gents-toilets stench.

His advice was simple and perfect. Especially in those days when we were sad, angry, lost and defeated. All at once. When we had all this emotion and nowhere to direct it except in all the wrong places. He told us, half cut and with cigarette smoke curling out of his hands, that now was the time for us to ‘say plenty of nothing’.

Just say plenty of nothing.

I am too much of a hot head, especially after a wine or two, to follow this advice to the letter, but professionally and personally it has heeded me well over the years. Making me put that ranty work email in drafts or walking into another room when the demands of raising children make me want to lash out at my husband for a minor misdemeanor.

Sometimes saying plenty of nothing is the single best thing you can do.

Then at other times we need to be saying plenty of plenty.

There are times, like now, when our views and beliefs need to boom and blast just to be heard above the rest of the bellowing and bewailing. There are times, like now, when despite feeling heavy with niggling uncertainty, incredulity and confusion, we need to create thunder.

Everyone I know has an opinion on President Trump, the Conservative Government, Labour leadership, the time bomb that is the NHS and the exit from Europe and they are not afraid to voice it. Some views are shared, some not, and that is as it should be. Who really wants to exist in echo chamber where your beliefs are unchallenged and unchanged because your only company is like-minded.

It feels like we are all being loud at the minute. Yet we can’t rest on our laurels. Not now. Here’s just one example of why.

As the country looked in 30 directions last week slightly awed and dazed, a London commissioning group released a statement saying it had decided to withdraw NHS prescriptions for formula feed to help reduce budget deficits.

It was buried deep in a press release that also spoke about the controversial close of a women-only mental health facility as well as stopping the prescribing of gluten-free products, vitamin D for maintenance and self-care medications.

Baby milk was thrown in at the back and it took outrage by a few keen-eyed parents to demand clarification of what baby milk would be included and this is where we have the frightening problem.

Croydon Clinical Commissioning Group could not, or refused, to clarify whether it meant the specialised formula milks that are thickened to help prevent reflux and the lactose free equivalents that are readily available and similarly priced to supermarket standard versions. Or whether they meant the expensive and difficult to obtain formulas for children who have cow’s milk protein allergy.

My son has cow’s milk protein allergy and let me tell you it is a beast.

Gabe.little

He was starving to death from it before our eyes before it was finally diagnosed when he was 15 months old. The repeated chest infections from the endless vomiting led to him being placed on a ventilator as his heart was growing too tired when a simple winter virus held him in its grips. Then weeks later he had to be blue-lighted to A&E when his lung collapsed and he couldn’t breathe.

He still today has severe psychological issues around food and has been referred to a psychologist for expensive counselling – a last-ditch attempt to get him to eat properly before we resort to the insertion of a PEG tube to feed him directly into his stomach.

His treatment in the form of an amino acid formula called Neocate keeps him alive, but it is expensive. A £55 box lasts us three-four days, drumming up a bill of over £400 a month.

Gabe.tube

I’m aware we are high-end users of the NHS so the last thing I want to do is bash it in the mouth, but if Solihull Clinical Commissioning Group follows suit (and other CCGs are considering it as we speak), we are going to find ourselves in a tricky pickle every month.

And what about all those babies to come that are crippled in pain from this allergy, yet their families can’t afford to pay the £30-40 for a tin (that lasts a couple of days) that would keep them pain-free? What happens to those families? What happens to those babies?

Although this potential NHS cut is personal to me, you could switch it to any medicine needed by any family member currently to give the same relevance and meaning. Because really who knows what is next. If it is baby milk today, what will it be tomorrow?

We could do worse in these times then come back to the words of Tony Benn, the genius of which was highlighted in the Michael Moore documentary Sicko:

“I think there are two ways in which people are controlled. First of all frighten people and secondly, demoralise them.”

Benn was convinced that there were people who did not want a healthy, confident, educated nation as it was harder to govern and harder to control. He said that if people are poor, demoralised and frightened, they were more likely to take orders and hope for the best.

Tony Benn sounded full of confidence and swagger when he told Michael Moore that if the NHS was privatised in the UK there would be a revolution. What he couldn’t realise then was that politicians would and could find a way around this. That is by doing it piecemeal right under our noses – bringing the NHS down brick by brick.

More worrying yet is that Theresa May has refused to rule out whether access to the NHS would be used as part of a trade deal with the US. In a Guardian interview, May said that it was only the “start of the process” of talking about a trade deal but added: “As regards the NHS, we’re very clear as a government that we’re committed to an NHS that is free at the point of use.”

Free at the point of use, however, has been diluted greatly year on year. The King’s Fund, an independent charity working to improve health and care in England, is currently researching how the slowdown in NHS funding since 2010 has affected patients’ access to high-quality care.

The findings from this study, which will be published early this year, will provide valuable insight into the impact that financial pressures have had on NHS patients and staff. It says that in the meantime the government should be honest with the public about what the NHS is realistically able to offer with its available funding.

But formula milk for sick babies is taking rationing under the radar far too far. As one commentator recently added: ‘Rationing services only leads to more expensive crisis management in the long run.’

So what can we do?

We can keep shouting and complaining. We can keep reading information posted by people we disagree with as the truth often lies somewhere in between. We can also keep an eye out for those stories rumbling away without the big fanfare. The ones happening right next to us as we are distracted debating just whether his hair colour is dirty blond, bold yellow or, hell yeah, good old plain orange.

I agree that the Trump state visit ban petition was heaps of fun, but maybe now we are more aware of the power of these petitions we could also try to spare a couple of minutes more to sign the ones where the parliamentary debates are essential. Just like the one currently circulating for the baby formula milk cuts.

These days we can’t afford to just hope for the best, no matter how frightened and demoralised we might be, as it will be used as a stick to beat us with. And it will beat us black and blue.

We need to say something, say anything, say everything and say plenty of it.

 

Benn3

 

The “Don’t allow prescriptions to stop for dairy free milk in the UK” is available to sign here.

 

4 Comments on Say something

  1. dairyfreebabyandme
    February 1, 2017 at 10:09 pm (3 weeks ago)

    Wow! Such powerful writing, Alison! This sums up so much of what I have been going through, in my head this week and you have poured it out in words. Thank you. xx

    Reply
  2. Rebecca
    February 2, 2017 at 7:13 am (3 weeks ago)

    Read.signed.forwarded. Powerful post, insightful and honest. I pray it’s heard far and wide.
    Rebecca recently posted…Vegan Peanut Butter CookiesMy Profile

    Reply
  3. Bernice Cullimore
    February 2, 2017 at 1:58 pm (3 weeks ago)

    Withdrawing prescription for special formula milk for babies is not acceptable. The high cost of these preparations would mean that many families would not be able to afford them and babies will die

    Reply
    • Alison
      February 2, 2017 at 2:11 pm (3 weeks ago)

      I know Bernice. My son nearly did. It is an extremely serious medical condition that is not even given the attention it merits by healthcare practitioners. Now we are thinking of removing the treatment. Crazy times.

      Reply

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