Response to the Petition to David Nicholson about test strips for T2s

[PattiEvans]

I sent off the petition to David Nicholson (CEO of NHS England) on 26 September. The petition can be seen here http://www.change.org/en-GB/petitions/david-nicholson-chief-executive-of-nhs-england-make-blood-glucose-test-strips-available-to-people-with-t2-diabetes. Despite receiving a delivery receipt I had no response, so on 9 October I sent another email, asking if I had sent the first email to the correct address for David Nicholson's PA and if not could the recipient please direct me to the correct address. Again I asked for delivery and read receipt.

I received a response from his PA

Dear Ms Evans

Thank you for your emails to Sir David Nicholson on the 26 September 2013 and the 9 October 2013, asking that he is made aware of the petition, I have made Sir David.

I will also share it with colleagues in Domain 2 - which is aimed at helping people with long term conditions.

If you have any further concerns please email this inbox directly and we will take them forward.

Many thanks

Cassie

Today I responded to this email as follows:

Cassie



Thank you for your response and for drawing Sir David Nicholson?s attention to our petition. We had expected a response direct from him. Can you tell me if he intends to respond and if so in what time frame such response may be expected?

May I also ask who or what Domain 2 is and where we may find more information on it.

Many thanks

Patti Evans

Admin at Diabetes-support.org.uk

and received this in response:

Dear Ms Evans

We had not intended to respond to your petition.

However, I can discuss with colleagues the issues you have raised. Would you be able to put into an email the concerns you have and we will provide you with a response?

NHS England has been organised nationally around five outcome domains, specified in the NHS Outcomes Framework, reflecting the importance of clinical leadership, domain 2 is enhancing quality of life for people with long term conditions. Dr Martin McShane is the Domain 2 Director.

This link provides more information on domain 2

http://www.england.nhs.uk/resources/resources-for-ccgs/out-frwrk/dom-2/

You might also be interested in knowing that in addition, practising clinicians from across England ? known as National Clinical Directors (NCD) ? are working part-time at NHS England to provide expert advice. The National Clinical Director for Obesity and Diabetes, Dr Jonathan Valabhji, has been lead clinician for diabetes at Imperial College Healthcare NHS Trust since 2008.

Many thanks

Cassie

Obviously your signatures mean nothing. Taking a look at the website she linked, para 1 says:

Helping patients take charge of their care
People with long term conditions and their carers could be better equipped to manage their own condition(s). Improving people?s health literacy ? helping them to understand how they can help treat and manage their condition(s) ? along with truly involving them in planning their own care helps improve the outcomes of treatment, prevents deterioration or complications (including admissions to hospital), and makes people feel more in control of their lives. General practice has a vital role in supporting people to take control of their own care.

How does that fit in with denying people test strips and telling them a once yearly Hba1c is sufficient.

Obviously what's sauce for the goose isn't sauce for the gander. So where from here? Press release?

 

[Northerner]

Bluster and poppycock! Yes, or would the Shadow Health and Jeremy Hunt's office be a further source for gathering more 'fine words and no action/commitment'? I came across so much of this Golgofrinchian Guff in big companies I have worked for, they contain no useful facts or processes

Sorry you have been given the runaround, but thank you Patti for all your efforts! 🙂

 

[PattiEvans]

I don't think it's ended here Northerner! I will be talking to my friend who is a journalist!

 

[Northerner]

I don't think it's ended here Northerner! I will be talking to my friend who is a journalist!

Excellent! 🙂

 

[happydog]

How disappointing! Thank you so much for having a go on behalf of T2s. Unfortunately I don't think that anyone cares too much about us, although I understand that there are one or two exceptions who care, not that I have met any myself so far. People on this forum excepted of course. At least you tried and you may yet have success. Thank you.

 

[DeusXM]

Don't mean to sound dispiriting, but what did you expect?

This guy is in charge of the NHS, he is not going to make time to draft a response to a petition with less than 330 signatories.

What you need are at least 5,000 signees. To even get a response, and probably far more to get a meaningful reaction. Diabetes UK can't even get the NHS to offer unrestricted strip access to T1s so you're going to need major firepower.

If you're going to a journalist, my advice would be the following:

They need facts - they need showing how much the NHS spends on strips, how much the NHS spends on treating complications, and a percentage decrease in spend that more access to test strips would create.

They need proof that increased test strip allocation would improve outcomes

Most important of all, you need a case study. You need someone who has been denied strips and lost an eye or a leg, then bought their own strips, been left thousands of pounds out of pocket but now because they've been buying strips, their health is dramatically better. You'll get bonus points if the person is a single parent who works a low-paid job.

You basically need things that will get people to get angry about the situation. The sad fact is that most people wont know or even care about diabetes, let alone the minutiae of managing it. Do keep trying, don't give up, and thank you for your efforts so far. We need people to stand up for all of us.

 

[PattiEvans]

This guy is in charge of the NHS, he is not going to make time to draft a response to a petition with less than 330 signatories.

What you need are at least 5,000 signees. To even get a response, and probably far more to get a meaningful reaction. Diabetes UK can't even get the NHS to offer unrestricted strip access to T1s so you're going to need major firepower.

I was pushed to do the petition and I spent considerable time posting in all the UK forums asking for signatures, bumping it up etc. Not to mention publicising it on FB in all the varying diabetic FB groups I could find. So frankly I was extremely disappointed by the lack of response from the very people I was trying to help. I now don't have too much time as I need to do a lot of reading prior to starting my pump which I have here with a start date.

If you're going to a journalist, my advice would be the following:

I am speaking to a friend, who happens to be a professional journalist and a T1, asking him to produce a professional press release. I've no need to persuade him that the issue is important as he's very well aware. In fact he helped to re-write the policy for diabetes in his area and one of the things he was very definite about was getting provision of test strips for T2s included in that policy. I am pleased to say he was successful. I hope he can be as successful on this subject.

I don't intend to give up, but a bit of enthusiasm from those T2s who need the help would make things easier. For example their stories of being denied and what it means to them.