What are your thoughts? - Next Steps

Please read the following and Let me know your thoughts. 

NICE & Parliament 

I spoke to the Parliamentary and Health Service Ombudsman yesterday. The customer service agent was pleasant and helpful. Unfortunately, as a campaign, we are not able to make a complaint via them. They only deal with individual concerns and this does not include policy complaints. However, she informed me that NICE does not have a regulatory body but is overseen by 'The Department of Health and Social Care' which is a Government Department (This goes against what the Government petition reply stated). Therefore, I am thinking of writing to the department explaining that we are receiving the same blanket responses from local MP's and see if they will consider helping us. I will bring this idea up in the first committee meeting on the 5th of August and I hope the committee will join me in writing to the department. 

In addition, Tamara (a supporter of the campaign) kindly sent the paper petition to her local MP and she received the same response the majority of us have received. Yet, she replied to the letter, re-stating the main statement in the paper protests and her local MP has passed the case on to - Jo Churchill MP
Parliamentary Under-Secretary of State (Minister for Prevention, Public Health and Primary Care). This is fantastic! (Thank you) and I would encourage all supporters to do the same.  Below is the email Tamara sent and received but I have removed confidential information.

Dear

Thank you for your follow-up email of 1st July regarding the management of chronic pain. Please accept my apologies for the delay in getting back to you, since we continue to receive a large amount of correspondence.

I take note of the points you raise and have written to the Minister of State for Prevention, Public Health and Primary Care, Jo Churchill, to relay them. I will report back to you with her response as soon as I receive it.

With best wishes.

Yours Peter.

Peter Aldous MP
Member of Parliament for Waveney

Constituency Office
The Kirkley Centre, 154 London Road South, Lowestoft, Suffolk, NR33 0AZ
Tel: 01502 586 568

Westminster Office
House of Commons, London, SW1A 0AA
Tel: 0207 219 7182

Dear Mr. Aldous,

Thank you for your reply.

I completely agree that pain management should put patients first and that doctors are able to treat and help each patient as is best for them. However, if doctors are unable to provide medication, even when they believe it is in the patient's best interest, then how can you say it is putting patients first? It assumes everyone in chronic pain (primary and secondary) is addicted to their medication (despite there already protocols in place to ensure medication isn't being misused or abused), and don't deserve a full range of management options.

I understand you are busy so will firstly state the points I would like you to bring up to the Ministers of Health and Social Care (which can also be found in the original paper protest I attached to my first email) then go into more depth of each point for you to refer to when you have the time.

1. This change is against the Human Rights Act as encourages inhumane treatment of patients.

2. The Information Commissioner has not accepted our case for a freedom Information Act against NICE which NICE originally denied.

3. The petition against these changes on Change.org currently has over 35 000 signatures.

This change is against the Human Rights Act as encourages inhumane treatment of patients

You say that those suffering secondary pain won't be affected by these changes, but many chronic illnesses take years to be diagnosed, due to lack of understanding and research. And, as you point out, chronic pain means pain lasting longer than 6 months, so it is illogical and against the Human Rights Act Article 3 (https://www.equalityhumanrights.com/sites/default/files/human_rights_human_lives_a_guide_for_public_authorities.pdf which prohibits inhumane treatment that causes serious physical and/or mental pain or suffering. Preventing patients from accessing medication they need is actively causing physical AND mental suffering.

The options the NICE guidelines have suggested as alternatives may be helpful alongside medication, but currently are unaccessible to most people, as there are long queues for these services (many CBT and exercise therapists have been cut from the budget so there are less available slots, yet more patients are in need of them), and they only last short times eg. Acupuncture is given for a maximum of 6 sessions, CBT for a maximum of 10, which obviously isn't particularly helpful for those of us suffering long term pain.

The Information Commissioner has not accepted our case for a freedom Information Act against NICE which NICE originally denied

The main issue is there has been little research done on this. Most doctors will only continue to prescribe medication if it is improving quality of life, and this article summarising a few studies that have been done regarding opioid use for chronic pain, shows that for the majority it does improve quality of life. https://www.tandfonline.com/doi/abs/10.1185/030079905X65321

As NICE has refused to share their research regarding this via the Freedom of Information Act it means we don't have access to the knowledge they supposedly have to make these decisions.

One of the links in the letter attached to my original email also has statistics at the percentage of chronic pain people who are only able to work due to taking pain medication. https://painuk.org/call-to-action

The petition against these changes on Change.org currently has over 35 000 signatures

You also state that there is no evidence to suggest pain medication can improve quality of life. From my personal point of view I know this to not be true as without pain medication I would likely need full time care and multiple hospitalisations, instead of being able to be mostly independent in my own home, with a few care visits per day. And the 35000+ signatures on the petition against these changes agree. I encourage you to take some time reading some of the comments. https://www.change.org/p/national-institute-for-health-and-care-excellence-stop-the-cruel-changes-to-chronic-pain-nice-guidelines?utm_source=share_petition&utm_medium=custom_url&recruited_by_id=f1ae4e40-aa1e-11e3-a495-e3095571e7f2

Thank you,

Tamara 

MP's with Special Interests

In addition, a supporter I spoke to on Instagram suggested that we write to an MP who has a special interest in supporting those with chronic illness and chronic pain as we are not having much luck with many local MP's at the moment. The first barrier we have with this is that many MP's will only speak to those in their local area. However, it is still not impossible and I will be looking into this and I hope the committee will join me. Also, if any supporters have any ideas on this please let me know. 

Health Watch Leicester 

Health Watch Leicester has recently got back in touch with me and below is their response. I really do hope their management does get back in touch even to just sign post us in a helpful direction. Health Watch has numerous branches, therefore if you would like to help please write or email your local branch informing them of this petition/campaign and asking for their help.

Hi Claire

I apologise for not coming back to you sooner, but I have been out and about since we last spoke and this is the first opportunity I have had to deal with this again.

I have been advised that we can log your issues on our CRM System which I will do, but we are not allowed to become involved in campaigning and therefore we cannot share it on our website.

However, I will share your email and concerns to our Chief Officer – Mukesh Barot who may have contacts who may be able to help, as he may have contacts on a more Corporate level who might be able to advise and offer you some support.

I am sorry I can’t do more, but hopefully Mukesh may be able to point you in the right direction.

Kind regards

Gill

Gillian Jillett
Community Outreach Lead – Leicester City
Healthwatch Leicester and Leicestershire | Clarence House | 46 Humberstone Gate, Leicester, LE1 3PJ
Tel: 0116 251 8313 | Mobile – 07732 683454 | Email: Gillian.Jillett@healthwatchll.com
Twitter:- @HealthwatchLeic | Web:– www.healthwatchll.com

Healthwatch Leicester and Leicestershire is delivered by Engaging Communities Staffordshire CIC
Registered Number:08026718
Registered Office: Suite 2 Opus House Priestly Court, Dyson Way, Staffordshire Technology Park, Beaconside.
Stafford ST18 0QL

Thank you all for your time and support, 

Best wishes, 

Claire xx