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.
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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

If you cannot register to attend the Glenfield consultation meeting, this is what you can do.

On Thursday March 9, NHS England will be holding a public consultation meeting to make their case for stopping children’s heart services at Glenfield Hospital.

Outrageously, NHS England have booked just one “public” meeting to discuss their plans. Even worse, the capacity of the venue is just 120 (96 reserved for the public). We plan to attend the meeting and, for those who are unable to book a seat, hold a demonstration outside.

If you have been unable to book a place at the meeting, you can ask to be put on the reserve list. Contact england.congenitalheart@nhs.net or tel: 07789 770037

 

Public consultation on the future of Glenfield children’s heart unit: Join the protest on March 9

NHS England have organised just one public consultation meeting for the whole of the East Midlands to discuss the future of Glenfield children’s heart unit. This is in spite of the fact that, just last week, over 2,000 people marched in support of the heart centre.

Even more outrageously, we have heard that the room booked by NHS England has a capacity of just 120 people! NHS England are clearly trying to limit the amount of opposition that they will face at the meeting.

But we will not be deterred!

The meeting will be held on Thursday March 9, at the Tigers’ ground (Welford Road), Leicester. We want as many people as possible to register in advance for this event.

Our aim is to send a message to NHSE by packing the event, and packing the streets outside.

We were told only 120 people could go, and at one point the option to go as a member of the public/patient disappeared from the NHSE event webpage altogether. We are still not sure if there was a glitch on the page, but until we can get confirmation one way or another, can everyone PLEASE PLEASE continue to register.

NHSE have made it as difficult as possible for people to attend the one event they are offering. Please don’t let them get away with saying no one is interested because not enough people have registered.

We will ensure that our voices are heard one way or another. If the room is filled, then we will fill the streets outside!

We want to gather outside at 4.30pm in order to make a protest!

You can register using this link  https://www.events.england.nhs.uk/nhsengland/frontend/reg/thome.csp?pageID=135420&eventID=591&traceRedir=2

You may have to put something in the “organisation” box in order to proceed. We recommend putting either “heart patient/family of heart patient” or “public”.

Please let everyone you can know about this and even if you don’t want to be in the meeting – come to the protest outside!

More than 2,000 people march to save Glenfield Children’s Heart Unit

Photos courtesy of Sarah Seaton

It has been estimated that more than 2,000 people were at the march to save Glenfield Heart Unit on Saturday. This is in spite of the bitterly cold weather.

Protestors chanted “Save Glenfield, Save Our Kids!” as they marched through the city centre. Cars beeped their horns in support and passers-by cheered.

Many demonstrators came adorned with artwork produced at the Save Glenfield day of action on January 27, in which 25 schools participated across the East Midlands.

At the rally at Jubilee Square, Aidan Bolger, consultant cardiologist at the Glenfield, addressed the crowd:

“Five years ago NHS England tried to close our service down. That decision was taken to court, and it was decided that that decision was unlawful.

“It was also referred to an independent panel and they said it was based on a flawed analysis of their data.

“And yet here we are, five years later, and they seem to be making the same decision; and the same people are behind it.

“We fought it off then and we will fight it off now!”

The people of Leicester should be proud. The high attendance in such adverse weather conditions clearly demonstrates the widespread support for the services at Glenfield.

Let’s continue to build the campaign, and demonstrate to NHS England that Glenfield will not be closed without a fight!

Photos courtesy of Charles Wheeler

Photos courtesy of Steve Score

Artwork produced at the Save Glenfield day of action

Thousands of students join campaign to save Glenfield Heart Unit

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The second march to save Glenfield’s Children’s Heart Unit is less than a week away, and opposition to the proposed closure is growing by the day.


On January 27th more than twenty schools across the East Midlands, and some further afield, threw their support behind our “Have a Heart” day of action.


Thousands of students and staff dressed in red, made placards, distributed leaflets, and generally raised much-needed awareness about the amazing work that is carried out at our much-loved Heart Unit.


This action was also taken up in workplaces across the region, raising thousands of pounds for the Leicestershire-based charity Heart Link — http://www.heartlink-glenfield.org.uk

A number of schools and workplaces that came a little late to the campaign have agreed to set up their own day to raise awareness about Glenfield.


This Saturday’s “March to Save the Heart Unit” in Leicester will serve as a critical reminder to the government that the British public want more not less heart units.