Save Glenfield: Complain to NHS England over their sham consultation

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As the consultation on the future of Glenfield Children’s Heart Centre draws to a close (ending on July 17), NHS England continue to avoid the public — the very people they are supposed to be consulting!

The Save Glenfield Heart Centre campaign encourages everyone possible to engage with the consultation (help can be found here: https://goo.gl/cGmdJN ).

But for those who have been excluded from the NHS England’s so-called “public” meetings, we hope that you will write letters/emails to NHS England, complaining about the farce that they call a public consultation.

The following is an email which was sent by a member of the Save Glenfield committee. We hope that it inspires you to do the same.

Complaints can be sent to: england.congenitalheart@nhs.net

Dear NHS England

I will be attending the meeting in Leicester on Saturday 1st July. I will be attending with my son who has CHD.

Can I register my extreme anger at the incredibly short notice given for this meeting.

We have been given just one week to advertise and make the public aware of this meeting.

I have felt from the beginning that NHSE are merely paying lip service to this public consultation, for a number of reasons. This feeling has been heavily reinforced by the so called public meetings.

The East Midlands is going to be the region most affected by the closure of the Glenfield, but the public meetings have been minimal, limited to ridiculously small numbers, at times when people cannot attend or arranged at such short notice that it is impossible to let those who would want to attend, know.

Please do not use purdah (the pre-election period in the UK, during which civil servants are not allowed to campaign) as an excuse.

You would have been aware, like everyone else, exactly when purdah ended. You had six weeks to arrange all these meetings which could then have been announced immediately when purdah ended.

At least then we would have had three weeks , rather than just the one week, to publicise the event.

I cannot see that how these can be described as public meetings if you seem to be going to such lengths to exclude the public.

Additionally, I think it is very duplicitous of you to describe the Leicestershire and Rutland Health Overview Scrutiny Committee meeting in Leicester next week as a public meeting.

It is not. It is a council meeting, arranged by the council, where NHSE has been asked to attend. The public can go in and may be allowed to ask questions/make statements, but it is by no means a ‘public’ meeting.

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Important diary dates for the campaign to #SaveGlenfield

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Now that the General Election is over, the campaign to save Glenfield Heart Unit is, like the weather, hotting-up. The East Midlands only has one heart unit and no-one is going to take it away from us without a fight.

With the aid of our campaign’s crib-sheet (which can be found online here), thousands of people have already contributed towards NHS England’s confusing online consultation process. It is important that as many people continue to engage with the consultation as possible.

But we also need feet on the ground (again) to make sure that NHS England see the faces of the thousands of people who oppose their attempted theft of our health services.

The following is a list of upcoming events at which we need maximum turn-out. Bring your friends, family and anyone you know who cares one ounce about the future of Glenfield Children’s Heart Centre.

Nottingham – Saturday 24 June, 2pm – the Heart Unit campaign have organised another public meeting in coordination with the Notts Trades Union Council. Come along if you want to find out what the official consultation is all about and how you can help participate in the process to save the heart unit (The Nottingham Mechanics, 3 North Sherwood St, NG14). https://www.facebook.com/events/114292552507394/?acontext=%7B%22ref%22%3A%223%22%2C%22ref_newsfeed_story_type%22%3A%22regular%22%2C%22feed_story_type%22%3A%2217%22%2C%22action_history%22%3A%22null%22%7D

Leicester – Tuesday 27 June, 5pm – officials from NHS England are in town to attend the “Leicestershire and Rutland Health Overview Scrutiny Committee” meeting. Therefore, we have organised a welcoming party to lobby NHS England as they arrive at this meeting (Leicester City Council building, 109-111 Charles Street, LE1 1FA). https://www.facebook.com/events/314927415628054/?context=create&previousaction=create&ref=5&page_id_source=1743079092623390&sid_create=59233081&action_history=%5B%7B%22surface%22%3A%22create_dialog%22%2C%22mechanism%22%3A%22page_create_dialog%22%2C%22extra_data%22%3A%5B%5D%7D%5D&has_source=1

Nottingham – Friday 30 June, 1.30 – 3.30pm. Nottingham Patient, Public, and Staff event. NHS England consultation event. The Wallace Rom, The Education and Conference Centre, Notts University Hospitals, City Hospital campus. To register for this event, email: ft@nuh.nhs.uk

Leicester – Saturday 8 July, 1pm – THIS IS THE BIG ONE. We have organised a mass protest in defence of Glenfield Heart Unit gather on Gallowtree Gate (outside of the old BHS) in Leicester City Centre at 1pm. LET’S MAKE IT REALLY MASSIVE. https://www.facebook.com/events/434176336955829/?acontext=%7B%22ref%22%3A%223%22%2C%22ref_newsfeed_story_type%22%3A%22regular%22%2C%22action_history%22%3A%22null%22%7D

Ask your MP whether they will campaign to Save Glenfield Heart Centre

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Following the recent general election, the campaign to save Glenfield children’s heart centre has put together a template letter which can be sent out to your new MPs to find out whether they and their party will commit to opposing the closure of Glenfield

Should we face another general election (not uncommon after such a close race), knowing which of our MPs and which parties support the campaign will be of great use to the campaign.

Please feel free to use or amend the text as you see fit, and please get back to us with any results.

 

Dear [insert name],

You will know that NHS England proposes to end surgery at the East Midlands Congenital Heart Centre and that it is currently consulting on these proposals.

Our campaign has worked alongside the University Hospitals Leicester Trust, patients and their families, staff, trade unionists and many members of the public and other campaigners. We helped collect the 130,000 signatures on a parliamentary petition calling for a review into the decision.

We have also organised a number of public meetings and protests of up to 2,000 people and are currently encouraging people to participate in the consultation by NHS England.

I appreciate that your time is limited, but we think it will be a quick and easy job for you to reply to the following question:

What will you do to oppose the proposed ending of surgery at the East Midlands Congenital Heart Centre at Glenfield Hospital?

If, after the consultation, NHS England decides to end these operations at Glenfield then local authority health scrutiny committees have the power to refer it to the Secretary of State for Health. This means that there would be ultimate political control over and responsibility for the decision.

Will you campaign for you party to not only oppose its closure, but also to commit to reversing the NHS England proposal?

Thanks in anticipation.

Yours sincerely,

[Your name]

“If it ain’t broke, then why fix it?” – Report on Saturday’s Save Glenfield public meeting

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“If it ain’t broke, then why fix it?” This succinct but penetrating question, posed at last weekend’s Save Glenfield public meeting, summed up the mood of the day.

The meeting, called by the Save Glenfield Campaign, was devoted to helping people understand NHS England’s long and complex consultation documents, which the public have been asked to fill out.

Unfortunately, the planned speaker from the local NHS Trust had to pull out at the last moment because of conflict of interest relating to the surprise snap general election. But Shirley Barnes stood in at short notice, and did an excellent job in explaining to the audience how to complete the consultation (drawing upon guidance sheets already provided by the campaign here: https://saveglenfieldheartcentre.wordpress.com/2017/04/05/a-short-guide-on-how-to-answer-the-online-consultation-on-the-future-of-glenfield-heart-unit/ ).

Steve Score, who chaired the event, summed up afternoon’s proceedings (see video below), noting that completing the paperwork for the consultation process was just one part of a campaign. Building upon the successful protests in Leicester, as well as last month’s massive It’s Our NHS demonstration in London, there will be many future events to build for both in Leicester and elsewhere.

The audience and the speakers were united in their condemnation of NHS England. Hardly surprising given how high the stakes are the stakes are.

As one member of the audience put it, the closure of Glenfield Heart Unit would have wide-reaching consequences: “closing Glenfield Heart Unit would completely destabilize all heart unit provision,” wherever you live in Britain. Closing Glenfield “throws it all up into the air and spoils it all.”

Certainly, the meeting helped to strengthen the resolve of all those in attendance. We are determined that NHS England will not be allowed to close Glenfield Heart Unit.

 


The public meeting to discuss the consultation document is part of a series organised by the Save Glenfield campaign. The next one will be held at 2pm on Saturday May 6 in Loughborough (Rosebery St. Peters Community Centre, Storer Road, LE11 5EQ). FB event page for this meeting can be found here: https://www.facebook.com/events/132713043936084/

The details for other upcoming meetings are listed below:

20 May – Mansfield Library, NG18 1NH

20 May – Lincoln (Location TBC)

27 May – Nottingham (Location TBC)

Derby – TBA

A short guide on how to answer the online consultation on the future of Glenfield Heart Unit

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NHS England’s consultation on the future of Glenfield Children’s Heart Unit is underway and will continue until June 5, 2017.

The public are being asked to participate in an online consultation (questionnaire) so that they can make their views known. But the consultation documents are long and the questions are far from straightforward.

The University Hospitals of Leicester (UHL) Trust has put together some suggestions on how to respond to these questions, but their document is still more than 20 pages (accessible here: http://www.eastmidlandscongenitalheart.nhs.uk/easysiteweb/static/ebooks/emch-consultation-guide/index.html#/0 )

It is for this reason that the Save Glenfield campaign has put together a shorter guide, which distils the Trust’s arguments into a more manageable length.

This guide has not been created as a replacement for the consultation documents. If you have the time, we encourage you to read through the official documents in full.

But we are realistic. We recognise that many will not have the time to do this. The consultation document is long and complex, and many of the questions in the consultation are deliberately opaque.

We believe that this is an intentional tactic used by NHS England to discourage people from participating in the consultation. If they succeed in this, and very few people take part in the consultation, they will claim that the public does not care about Glenfield Heart Unit.

Please do fill in the consultation. Share this article with your friends and family to get them to do it too.

The threatened closure of Glenfield Heart Unit is a national issue. That said, it can be filled in by any members of the public.

For those of you who are Twitter users, the hashtag is #SaveGlenfield. Follow us @GlenfieldHearts

The online consultation can be accessed on the following link: https://www.engage.england.nhs.uk/consultation/chd/consultation/intro/

 


 

Please use the following only as a guide. Text should not be copied word for word from this document. Please answer questions in your own words.

When filling in the consultation document we have provided suggestions for issues you might want to take up. But don’t feel that you have to raise all of these issues! One or two would be okay.

Acronyms:

CHD – Congenital Heart Disease

ECMO – Extracorporeal membrane oxygenation (cardiac and respiratory support for persons whose heart and lungs are failing)

EMCHC – East Midlands Congenital Heart Centre

NHSE – NHS England

PICU – Paediatric Intensive Care Unit

 

  1. In what capacity are you responding?

Unless a parent or patient, most will be “member of the public”

The “Other” box can be used if you are filling in the consultation on someone else’s behalf. If this is the case, write “advocate” and input their postcode into this box.

 

  1. In what region are you based?

Area depending on postcode.

 

  1. NHS England proposes that in future Congenital Heart Disease services will only be commissioned from hospitals that are able to meet the full set of standards within set timeframes. To what extent do you support or oppose this proposal?

Recommended response: Strongly oppose

 

Explain your response:

Our suggestions:

  • In the consultation document, NHSE admit that none of the centres currently meet all the standards.
  • Glenfield is on course to meet NHSE’s standards by 2018/2019.
  • NHSE’s arguments are inconsistent. Newcastle is being given more time to meet standards. If it is possible to make an exception for Newcastle, why not Glenfield?

 

  1. Can you think of any viable actions that could be taken to support one or more of the trusts to meet the standards within the set timeframes?

Our suggestions:

  • Apply standards consistently – all centres should be treated the same. Newcastle, for instance, is not under threat of closure despite not meeting targets.
  • The ability of each centre to meet the standards should not based on the closure of another centre.
  • Support Glenfield to get all the cases from hospitals in the region, which should be referring to the unit instead of sending patients outside of the region.
  • Come and see what the unit does and speak to parents and children. See all the services the hospital provide.

 

  1. If Central Manchester and Leicester no longer provide surgical (level 1) services, NHS England will seek to commission specialist medical services (level 2) from them, as long as the hospitals meet the standards for a level 2 service. To what extent do you support or oppose this proposal?

Recommended response: Neither support or oppose

It is not possible to answer this question sensibly as the reasons for closing either centre are very different.

 

  1. The Royal Brompton could meet the standards for providing surgical (level 1) services for adults by working in partnership with another hospital that provides surgical (level 1) services for children). As an alternative to decommissioning the adult services, NHS England would like to support this way of working. To what extent do you support or oppose the proposal that the Royal Brompton provide an adult only (level 1) service?

Recommended response: Neither support or oppose

 

  1. NHS England is proposing to continue to commission surgical (Level 1) services from Newcastle upon Tyne Hospitals NHS Foundation Trust, whilst working with them to deliver the standards within a different timeframe. To what extent do you support or oppose this proposal?

Recommended response: Strongly oppose

We would strongly oppose this only because it treats one centre differently from another. If the same approach was applied to all centres equally then we would support this

 

  1. Do you think our assessment of the impact of our proposals on patient travel is accurate?

Recommended response: No

 

  1. What more might be done to avoid, reduce or compensate for longer journeys where these occur?

NHS England’s travel analysis is fundamentally flawed so we recommend raising the following points:

  • NHSE should publish data so everyone can understand how they came to the conclusion that moving the heart centre to Birmingham will increase travel times by only 14-minutes.
  • NHSE’s projected travel times are presumably by road, but many patients are dependent on public transport.
  • Cost of using public transport/taxis to get to hospital will have negative impact, particularly on poorer families.
  • Disruptive if you have a disabled child.

 

  1. In our report, we have assessed the equality and health inequality impacts of these proposals. Do you think our assessment is accurate?

Recommended response: No

 

  1. Please describe any other equality or health inequality impacts which you think we should consider, and what more might be done to avoid, reduce or compensate for the impacts we have identified and any others?

Our suggestions:

  • NHSE ignore issues related to high rates of poverty, which are prominent in the East Midlands. Low incomes households are severely affected by things like travel times, accessibility, family support, and social care provision.
  • Congenital Heart Defects are for life. This means that patients require many appointments, making continuity of care essential.
  • There is a higher incidence of disabilities in children with CHD, making continuity of care essential.

 

  1. We want to make sure that the proposed changes, if they are implemented, happen as smoothly as possible for patients and their families/carers so it is important that we understand other impacts of our proposals. Do you think our description of the other known impacts is accurate?

Recommended response: No

 

  1. Please describe any other impacts which you think we should consider, and what more might be done to avoid, reduce or compensate for the impacts we have identified and any others?

Our suggestions:

  • Moving the centre to Birmingham risks losing staff.
  • Other centres already have issues with capacity. If Glenfield is closed, cardiologists may struggle to find beds for their patients.
  • No other centre provides mobile ECMO.
  • All UK ECMO training is provided by EMCHC.
  • ECMO international centre of excellence, it should, therefore, have the same status as Newcastle, which carries out heart transplants.
  • Increased distances will overstretch ambulance services.
  • NHSE has provided no plans of how level 2 centres will work.
  • Outreach clinics not possible across a large region.
  • Risk of staff moving abroad.
  • Outcome of review into PICU (Paediatric Intensive Care Unit) not known. Should have been done before the consultation.
  • Feotal medicine, needs continuity of care.
  • Financial cost of building extra capacity.
  • Children missing school because of travelling.
  • Lack of beds in emergencies. Children travelling all over the country for surgery.

 

  1. Do you have any other comments about the proposals?

Our suggestions:

  • The East Midlands will become the only region in the country without a heart unit if Glenfield is closed.
  • Patient and family satisfaction rating 99%.
  • Care Quality Commission rated Glenfield as outstanding.
  • Glenfield is the only hospital that provides a Mobile ECMO Unit.
  • Glenfield provides 55% of the country’s ECMO capacity.
  • PICU review should have been done before the consultation.
  • Lack of patient choice if Glenfield loses its heart unit.
  • Financial cost of moving’ CHD heart surgery to a new centre.

Public meeting to discuss how we can beat the consultation and save Glenfield heart centre

NHS England are now ‘consulting’ on their plan to end heart surgery at Glenfield. The public are encouraged to participate in this consultation by filling in an online questionnaire.

But NHS England have made the document unnecessarily complicated — perhaps to put people off.

The campaign to Save Glenfield Heart Centre has responded by organising a series of public meetings to discuss how we can beat their rigged consultation.

The first meeting will be held on Saturday April 22, at the Adult Education Centre, Belvoir Street, Leicester, beginning at 2pm. The Facebook page for the event can be found here: https://www.facebook.com/events/1466930666670777/

A second meeting has also been organised in Loughborough, and will be taking place on Saturday May 6, at the Rosebery St Peters Community Centre, Storer Road, Loughborough.

Other meetings in Mansfield, Nottingham, Derby, and Lincoln will be announced in the near future.

Although NHS England have made the online consultation difficult to fill in, it is essential that as many people respond as possible.

Come to one of the meetings to find out how best to respond to their questions.

Save our Glenfield, Save our NHS: Report from the national NHS demonstration

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An estimated 250,000 people joined a demonstration in London yesterday to save the NHS, making it the largest of its kind in history. And the Save Glenfield campaigners were there in force!

More than 100 activists from Leicester, including many involved with the Save Glenfield Heart Centre group, attended the demonstration – supported by PCS and Unite who provided coaches.

Chants included “No ifs, no buts, no NHS cuts” and “Save our Glenfield, save our NHS”.

Protestors from other groups asked us about what the “Save Glenfield” campaign was about, before expressing solidarity and joining in with our chants.

One protestor said that, having walked the length of the demonstration, the Leicester contingent was amongst the loudest and most vibrant.

In an unexpected boost, Len McCluskey, the leader of Britain’s largest trade union Unite, name-dropped the Save Glenfield campaign at the closing rally:

“I marched in Leicester… the largest demonstration that had ever been seen in Leicester defending the children’s heart unit that they [the government] are trying to close down. And that’s why today you are the voice of millions and millions of people.”

The march was organised by Health Campaigns Together, a group which aims to bring together the all the many health campaigns which have sprung up around the country for the common purpose of defending the NHS

The Save Glenfield group supports Health Campaigns Together in fighting for a fully funded NHS.

Photos courtesy of Steve Score and Michael Barker