Over the last six weeks ten people have died from the H1N1 'swine flu' virus. Please please please, treat this with the seriousness it deserves. If you are in an at risk group, elderly, pregnant, or asthmatic, and you come down with flu like symptoms go to you doctor immediately. Do not wait. Do not allow yourself to be fobbed off. If you haven't gotten a shot of the vaccine, go to your doctors ASAP and see about getting one. This is life and death. It could be your life or death.
John Freeman
Saturday 11 December 2010
Monday 15 November 2010
Notes from our meeting with Andy Burnham 8/10/2010
Present: R. Ford, W. Ford, J. Freeman, A. Burnham, M. Farrah, J. Eddleston
On the availability of ECMO and specialist respiratory care in the Northwest:
· Jane Eddleston led the critical care network during the H1N1 outbreak, and feels the plan worked well.
· ECMO needs at least 20 cases per year in its area to justify buying and using it- especially expense of maintaining staff with the needed expertise.
· There were 150 H1N1 cases in the Northwest, over 50% in the immediate Manchester area.
· Earlier assessment and referral for ECMO use requires greater respiratory expertise than is available in the Manchester area presently. Directly relevant to Sue.
· Cases such as Susan and Gemma suffered not just from lack of expertise, but from availability: Catch 22 of well enough to travel = to healthy to justify use.
· The Cardiac care, Paediatric and Neonatal case for ECMO are well established.
· Oscillatory ventilation was found to be useful by Brampton.
· This suggests that a North West centre for excellence in respiratory care may be the way forward: A hub of expertise and technology in respiratory care, not limited to just ECMO but including oscillatory ventilation and other strategies.
· The National selection panel meets in December.
o They will decide future strategy.
o They will ask for solicitations of interest.
o Manchester can put in a bid for funding.
o There are 5 northwest centres that could be putting in a bid for funding.
o A bid for the Manchester area can be put forward.
· ECMO care can be present in this hub if the numbers of cases per year requiring it justify it.
· Mobile ECMO units? Not clear how this would work.
o A mobile unit still needs the staff with relevant skills
o These staff would not leave the hospital, meaning the unit would go, pick up the patient and return, doubling trip length!
o Necessary infra structure in the hospitals does not yet exist
Questions regarding ECMO and respiratory care:
· Why did the Caesar study take so long and why has the response to it been so long coming?
· ECMO was obtained and in use 6 months prior to outbreaks abroad. What was different here?
Questions regarding Susan’s case:
· Why she was not offered oscillatory respiration?
o Oscillatory respirator not available.
· Why was the catch 22 with ECMO allowed?
· Why could a referral not be made before her condition deteriorated too much for her to travel?
o Needed expertise not present?
Saturday 13 November 2010
Notes on our meeting with Andy Burnham Meeting. 1/10/2010
On the availability of ECMO facilities for the Northwest:
· Currently the NHS system is about to enter a period of flux. Current government intends to make GPs solely responsible for allocation of NHS funding.
· At the current time the question of an ECMO device in the northwest falls under the auspices of the Strategic Health Authority, headed by Mike Ferrah.
· ECMO would fall under ‘specialist comissioning’ and it is unclear whom would be responsible for this under the new NHS regime. No decisions possible until this is resolved.
· There are staff at Wythenshaw hospital trained to run an ECMO device, but there is no machine on that site at present.
·
Our aim therefore is to influence the regional decision making process at work in the northwest.
· If the current government allows the old system to remain in place until more details of the new system are properly established we may be able to persuade Mike Farrah to look at implementing ECMO for the Northwest before he leaves his position.
o Andy Burnham has sent a letter to Andrew Lansley to this effect.
· It may also be possible for Mike Farah to push ECMO in the northwest through before he leaves office if he acts promptly.
· If not it is unclear who we will need to contact.
· Andrew Lansley the current health minister is in a precarious position due to the lack of details in the white paper on the new NHS he published. If he backs down he risks loosing further credibility. He may not hold the post for much longer, adding further instability.
· At present our best option in the near term is to persuade Farrah to try to push ECMO through. If he cannot we will have to wait to see how the NHS vs LHS (‘Local Health Service’) situation progresses.
o In this case it may be possible to seek assistance from vulnerable patients groups.
· As staff are present then the only objection is the cost of aqquiring an ECMO device. We may be able to overcome this directly by means of a fundraiser, which Andy Burnham will support.
· John Freeman will start a blog to promote ECMO in the northwest, and to promote a possible fundraiser.
· Andy Burnham will ask Chief Exec of University Hospital South Manchester what the current position and impression is on ECMO.
Questions we wish to put to Mike Farrah:
· Before you stand down is it possible for you to push through the issue of funding for an ECMO in the northwest.
· Is it possible to convince the NHS to fund an ECMO device for the northwest, or shall we proceed with the fundraiser?
· Is there any indication where ‘specialist commissioning ‘ will fall under in the new NHS system?
· What is current situation with the civil service shutdown?
· How can we proceed if we do find ourselves working in a purely market forces driven system?
Case for ECMO:
· A well understood technology, which has been used for 40 years.
· Has a wide range of applications, not just the (debated) application to acute respiratory distress.
· Has been cited as directly linked to the survival of a Scottish woman with H1N1, who was transferred to Sweden where ECMO is more available.
· Is particularly applicable to at-risk infants.
· Is a logical compliment to existing facilities.
· Many patients to whom ECMO may have been applicable were caught in a catch 22 situation, as Susan and Gemma were: If the patient is well enough to travel the distance to the ECMO device they are deemed not in enough need to warrant its use. If they are in dire need then any form of travel will likely kill them. Susan could not be moved fifteen meters down the corridor.
o This demands a Northwest hub for ECMO, as well as greater availability nationwide. Patients dying, grieving families left in doubt as to effectiveness of care, due to an easily foreseeable catch 22 situation is not acceptable for the 2nd best healthcare system in the world.
With regards to Susans case specifically?
o We would like a breakdown of the decisions made during the 9 hours she waited between admission and the C-section.
§ Was a transfer to an IC specialising in the area of her illness considered.
§ If not, why not, given that Hope IC is a head trauma specialised unit, and moving her post C-section would always be more risky.
§ If it was considered, where would she have been transferred to?
o Why were we discouraged from researching ECMO? Such discouragement itself raises questions about the source; If ECMO is truly ineffective our own research would have confirmed this.
o How many H1N1 cases did hope have at the time of Susans illness? What was the survival rate?
Notes from our meeting with Andy Burnham, 12/03/2010
General conclusions:
• We have an immediate and obvious concern about cleanliness: Rob observed a member of the cleaning staff, on more than one occasion, cleaning and touching equipment inside the ICU with water used to clean the window sills.
• We have concerns over what we have observed of the treatment of swine flu sufferes. As an example; Gemma being told to wait in the car until she collapsed outside of the hospital.
• The first two points beg the question; is national policy being made clear to, and implemented by, clinicians?
• Andy Burnham will arrange a meeting with the chief medical officer, to discuss our concerns and questions, and including them in the upcoming review of swine flu and its handling.
• We’ll provide a list of issues for him and his staff to review before the meeting.
• Andy Burnham will also arrange a meeting for us with the specialist commissioning group, and for us to have access to their reports and minutes of their meetings before the meeting.
• After the meeting with the chief medical officer we’ll make a decision on if/how to campaign for access to ECMO in the northwest.
• We’ll make contact with other parties (such as Gemma and her family) concerned over ECMO and the recent handling of swine flu
Unanswered questions on ECMO:
• Why are so few ECMO devices distributed so unevenly, and in such tight clusters? This restricts access, especially for those who are to unwell too be moved large distances (or at all).
• Why is the north entirely without access to ECMO?
• NICE has not reviewed the use of ECMO since 2004, and in the interveneing time a wealth of clinical data supporting its use has emerged.
• There are no future plans for the development and use of ECMO.
• There are doubts in some quarters over the effectiveness of ECMO treatment in cases like Susans:
1. Why has more, and more recent, research not been done into this matter?
2. What action can be taken to improve understanding of ECMO and how appropriate it would have been to cases such as Susans?
• Given that ECMO technology applies to many conditions (transplant patients, ARD, premature births), can more effort be made to reduce the prohibitive level of resources needed for one machine?
• What was the reasoning behind the rejection of ECMO as a treatment for Acute respiratory distress? A considerable amount of foreign research prior to last summers outbreak supports its use as a palliative treatment.
• While the value of ECMO specifically may be debated by some, it seems beyond argument that a device of the ECMO type (an external circuit for oxygenating the blood) could save lives in cases of severe lung failure. What research is being done on such devices?
On the vaccination program:
• Susan became infected at the beginning of October. Had the vaccine been generally available one month earlier her chances of survival might have been greatly improved.
• Was the Adjuvant ( Part of the relevant virus that must be combined with the model vaccine) taken at the earliest possible opportunity?
• Could vaccine production have been begun prior to the pandemic declaration?
• Was the vaccine manufactured and delivered as fast as possible?
Time line
2004 to 2005: H5N1 (bird flu) is considered a danger. ‘Model vaccine’ produced requiring an ‘adjuvant’ (check spelling) from a virus to be tailored to a particular strain of virus.
Unknown date: ECMO is considered for palliative treatment of Acute Respiratory Distress (end result of swine flu) and rejected by the Specialist commissioning group.
2007-8: H1N1 is identified as a threat. Pre-pandemic planning takes place (pandemic meaning a disease that is spreading through populations in at least three countries). As a result a £120,000,000 pre-purchase agreement is made with Glaxco-smithclyne and Baxter, for 90,000,000 doses (two per citizen).
NB: This buys vaccine production capacity for great Britain, so that when the vaccine begins production Britain will be one of the first in the line. The vaccine does not go into production until a pandemic declaration in issued by the World Health Organization, and an adjuvant of the relevant strain of virus is taken.
Tamiflu and Rulenza stockpiled.
2008: Baxter fail to deliver a satisfactory vaccine.
June 2009: WHO issues a pandemic declaration Pre-purchase agreement goes into effect. First batches of vaccine are delivered September 2009.
October 2009: Vaccine is generally available.
• We have an immediate and obvious concern about cleanliness: Rob observed a member of the cleaning staff, on more than one occasion, cleaning and touching equipment inside the ICU with water used to clean the window sills.
• We have concerns over what we have observed of the treatment of swine flu sufferes. As an example; Gemma being told to wait in the car until she collapsed outside of the hospital.
• The first two points beg the question; is national policy being made clear to, and implemented by, clinicians?
• Andy Burnham will arrange a meeting with the chief medical officer, to discuss our concerns and questions, and including them in the upcoming review of swine flu and its handling.
• We’ll provide a list of issues for him and his staff to review before the meeting.
• Andy Burnham will also arrange a meeting for us with the specialist commissioning group, and for us to have access to their reports and minutes of their meetings before the meeting.
• After the meeting with the chief medical officer we’ll make a decision on if/how to campaign for access to ECMO in the northwest.
• We’ll make contact with other parties (such as Gemma and her family) concerned over ECMO and the recent handling of swine flu
Unanswered questions on ECMO:
• Why are so few ECMO devices distributed so unevenly, and in such tight clusters? This restricts access, especially for those who are to unwell too be moved large distances (or at all).
• Why is the north entirely without access to ECMO?
• NICE has not reviewed the use of ECMO since 2004, and in the interveneing time a wealth of clinical data supporting its use has emerged.
• There are no future plans for the development and use of ECMO.
• There are doubts in some quarters over the effectiveness of ECMO treatment in cases like Susans:
1. Why has more, and more recent, research not been done into this matter?
2. What action can be taken to improve understanding of ECMO and how appropriate it would have been to cases such as Susans?
• Given that ECMO technology applies to many conditions (transplant patients, ARD, premature births), can more effort be made to reduce the prohibitive level of resources needed for one machine?
• What was the reasoning behind the rejection of ECMO as a treatment for Acute respiratory distress? A considerable amount of foreign research prior to last summers outbreak supports its use as a palliative treatment.
• While the value of ECMO specifically may be debated by some, it seems beyond argument that a device of the ECMO type (an external circuit for oxygenating the blood) could save lives in cases of severe lung failure. What research is being done on such devices?
On the vaccination program:
• Susan became infected at the beginning of October. Had the vaccine been generally available one month earlier her chances of survival might have been greatly improved.
• Was the Adjuvant ( Part of the relevant virus that must be combined with the model vaccine) taken at the earliest possible opportunity?
• Could vaccine production have been begun prior to the pandemic declaration?
• Was the vaccine manufactured and delivered as fast as possible?
Time line
2004 to 2005: H5N1 (bird flu) is considered a danger. ‘Model vaccine’ produced requiring an ‘adjuvant’ (check spelling) from a virus to be tailored to a particular strain of virus.
Unknown date: ECMO is considered for palliative treatment of Acute Respiratory Distress (end result of swine flu) and rejected by the Specialist commissioning group.
2007-8: H1N1 is identified as a threat. Pre-pandemic planning takes place (pandemic meaning a disease that is spreading through populations in at least three countries). As a result a £120,000,000 pre-purchase agreement is made with Glaxco-smithclyne and Baxter, for 90,000,000 doses (two per citizen).
NB: This buys vaccine production capacity for great Britain, so that when the vaccine begins production Britain will be one of the first in the line. The vaccine does not go into production until a pandemic declaration in issued by the World Health Organization, and an adjuvant of the relevant strain of virus is taken.
Tamiflu and Rulenza stockpiled.
2008: Baxter fail to deliver a satisfactory vaccine.
June 2009: WHO issues a pandemic declaration Pre-purchase agreement goes into effect. First batches of vaccine are delivered September 2009.
October 2009: Vaccine is generally available.
Thursday 11 November 2010
One Year Ago....
Recently I celebrated my daughters first birthday. But this was a day of mixed and powerfull emotions, as Poppys mum, Susan, died of acute respiritory distress- a result of the H1N1 virus- three weeks after she was born.
Susan never had the chance to meet her daughter, a fact of life I struggle to accept.
Over the next few months i am going to try to relate a few things: My joy at watching my daughter grow, my love for Susan and my grief at her not being with me. And the process I and Susans familly are going through to try and bring some good from her death- by improveing the state of care for respiritory illness in the North West of England. Nothing that comes from this can restore what has been lost.
That's all for now.
Susan never had the chance to meet her daughter, a fact of life I struggle to accept.
Over the next few months i am going to try to relate a few things: My joy at watching my daughter grow, my love for Susan and my grief at her not being with me. And the process I and Susans familly are going through to try and bring some good from her death- by improveing the state of care for respiritory illness in the North West of England. Nothing that comes from this can restore what has been lost.
That's all for now.
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