Government Changes

[MamLesley]

Hi i have just revived a letter from Manchester Royal Infirmary to say that due to changes that the government whant to make with services for Adult Congenital Heart Diseases, that due to staff shortages they can no longer provide this service. Q&A session on 1st July. Dose anyone else have any info?

[Midgeymoo17]

Hi, you do not say what you want more information on so I have tackled 3 things: 1)What the changes in Manchester are? 2)The actual logical ten year planning process that has gone into the governments recommendations for change 3) Trying to illustrate/ explain why the MRI have chosen to cease those services.

Can I just clarify that they are not completely stopping the Adult Congenital Heart Service at Manchester. There are elements that they have had to cease because the brain drain has become untenable. The areas that have ceased: Cardiac Surgery (like open surgery), Any Interventional Procedure or Planned inpatient stay. Services that (as far as I can make out) are continuing out of the Manchester Royal Infirmary are almost all outpatients i.e.: seeing your doctor, MRI Tests, exercise tests, echocardiograms etc. So basically Manchester has become a for of outreach clinic where ACHD patients can be appropriately monitored and referred on if intervention is required.

I know that if you are cared for at Manchester this is a worrying time but may I suggest you check out this lecture given by Professor Elliott director of paediatric cardiocthoracics at Great Ormand Street. It explains greatly the history behind the suggestions made by the government and fairly well explains the need to implement them.

youtube.com/watch?v=RHi2G00...(Not working as expected?) .

Closing centres is never greeted well by the public but it has been shown to actually improve outcomes for patients. A similar effect was instigated for Major Trauma Patients (created major trauma centres who receive the most seriously injured patients rather than take them to the nearest A&E) and this has been studied extensively and showed to save lives. This is so much (as the video points out) that most cardiologists and cardiothoracic surgeons support the idea of re-structing congenital care- but as per usual no-one wants it to be their centre.

However, on this occasion I can not help but feel concerned about the uncoordinated and unstaged way this occurred in Manchester leaving rather leaving patients in the lurch. The best way you can contribute is to make sure you understand the history, evidence behind the proposals and respond with an informed view to the below public consultation:

engage.england.nhs.uk/consu...

Whilst I am sure you will join me in being annoyed at the poor way ending these services occurred rather than a phased and safe transition, please appreciate the Manchester Royal Infirmary have taken in order to keep their patients safe.

I am not normally treated in Manchester but attended A&E earlier this year (April) where I was seen by a ACHD Clinical Research fellow from the Royal Brompton. I suspect he was acting/ being paid as a locum in order to make the ACHD service as safe as possible. I suspect he does not normally work there as he admitted me then did not know how to admit me (he needed the help of other staff) and then come the morning someone said there not sure where my notes were. As I say I suspect the breakdown in communication was a result of the problems in the service which I hope you can see the danger of continuing in that position.

I have no extra information on the Q&A session than what is already in the public domain as I am not currently living in Manchester (I am at the Uni of Manchester) nor is Manchester my specialist centre. [Other than A&E visit the only involvement the the Heart Centre has had is approval of other very minimal ENT treatment I received at the trust].

I hope this helps.

[Julel in reply to Midgeymoo17]

It seems to me to be just another cost cutting exercise to be frank. Obviously it's cheaper to just let heart disease patoients die rather than fund hospitals and clinics sufficiently to keep them open, and patients alive: and think also of the cumulative savings in terms of 'aftercare' and repeat prescriptions! From an economic perspective it's an easy saving. In point of fact however the closure will simply put more strain on staff and facilities at Tameside and Wythenshawe heart units, and leaves existing patients, of whom I am one, floundering. . I'm under MRI and would have died two years ago without their intervention procedures. I am absolutely furious about this.

Isn't life post heart attack stressful enough without having the support withdrawn at practicallly a moments notice? I have protested, and tried to involved in dialogue without even receiving the courtesy of a reply.

.

[Midgeymoo17 in reply to Julel]

Jules possibly the reason people did not give you a response is you do not seem to have actually understood what the proposals are about. Firstly these proposals do not affect those with ischemic heart disease (heart attacks) these will continue to be fully treated at the Manchester Royal Infirmary.

It affects what is a very small minority with congenital heart defects (problems they are born with not post heart attack) so actually it will have no affect on Tameside or Wythanshaw as these hospitals did not have the expertise to treat this group anyway (never have) nor should they be treating these patients. Due to the niche speciality with in cardiology the proposals are much more about safety than cost cutting.

This is quite an important point because the procedures performed on congenital heart defects are much more diverse and complicated than those with ishemic heart disease. For a surgeon to have adequate experience they must perform a minimum number for the experience. A suggested minimum misplaced in the proposals and was designed to make sure the treating doctor had the experience to safely treat the patient. The mimic is still low at a little over 1 operation a week. I would really not want a surgeon who performs less than 1 operation a week operating on me. If I remember rightly Manchester did not meet this standard.

Again I will say it we know that concentrating highly specialised services works better and saves lives from the research into the Major trauma Unit system. The major trauma unit system works as: critically ill patient after accident; ill patient taken to nearest A&E and stabilised (or if stable enough straight to major trauma centre); then moved by ambulance to major trauma centre for all intervention and rehabilitation. This has been shown to improve survival from major trauma by 30%. The spoke and hub system saves lives for patients requiring niche highly specialised care by ensuring the physicians treating have the required knowledge and experience- this is why as the video says a resounding majority of both congenital and adult congenital heart doctors support implementing the system but like us as patients can not decide where should be hubs and where should be spokes.

Second thing is that Manchester have not withdrawn the support for there patients. Most support for lifestyle and living issues is either addressed in outpatients or on the phone to the clinical nurse specialists both these services are continuing and will continue under the proposals. As such this does not affect 'aftercare costs' as the follow up and aftercare is continuing.

Although as I stated the transition from a hub to a spoke shouldn't have happened overnight- it should have been a slow and carefully planned transition. This was major disappointing and seriously let down the congenital patients attending the manchester royal infirmary.

[MamLesley in reply to Julel]

I know how you feel My thoughts have been how the system has let me down. I had treatment as a child over 50 years ago, parents always believed problem solved I blissful carried on with my life not aware that a congenital heart problem is there forever. I now have a complex heart problem and still after 4yrs of tests no one is willing to operate. And now no department?????????

[MamLesley in reply to Midgeymoo17]

Thank you for the information . The news came out of the blue as I have not seen my Doctor for over a year and have been struggling with my daily life. Now i will be more proactive and short something out .

[Midgeymoo17 in reply to MamLesley]

Good luck. I do not mean to defend what has happened in Manchester as the transition should have been coordinated and planned. I just tend to find people do not realise there is a lot more than cost cutting behind the proposals. In fact a large number of the proposals are driven by the current system failing to deliver the best of care as highlighted by the public inquiry in the Kennedy Report.

As I say I think you will still see your Doctor at the Manchester Royal Infirmary it only affects if they need to do something. But the consultations was the bit of outpatient care I was less sure of what the information was saying.

[Julel]

I was interested to read your response here Midgeymoo17; I did in fact understand the proposals ( I have a hereditary heart defect which caused my recent attack) but would point out that even if I had not done so I would at least have expected the courtesy of an explanatory reply.

You said:

"It affects what is a very small minority with congenital heart defects (problems they are born with not post heart attack) so actually it will have no affect on Tameside or Wythanshaw as these hospitals did not have the expertise to treat this group anyway (never have) nor should they be treating these patients. Due to the niche speciality with in cardiology the proposals are much more about safety than cost cutting."

I wonder if this "small minority" is happy with the decision? I also wonder quite how far they will now be expected to travel for treatment or appointments?

I am glad that you accept that the transition has neither been properly coordinated or planned, and would reiterate that this inevitably adds to patient stress. The fact that only a "small minority" is affected is not, in my opinion a valid argument for withdrawing the facility and resources from Manchester in such a poorly executed transition. The current system, as you say, may not always deliver the best of care, but I am far from convinced that the proposed alternative is a vast improvement.

However I would like to thank you for responding, we will have to agree to disagree about the cost cutting motives which I still suspect are at least partially responsible for the decisions which have been made. The ten year planning g process you alluded to in your original post resulted in the governments recommendation for change as far as I am aware, and I have little confidence in the governments true understanding of the implications of this change in the lives of congenital heart defect patients.

[Midgeymoo17 in reply to Julel]

My apologies the way you referred solely to heart attacks confused me. You keep quoting my use of small minority- adult congenital heart is by fact a minority of all adult cardiology. I was not using it as an excuse for the way this has happened in Manchester and its effect on their patients. The inference was solely the result of my confusion as to whether you understood the difference between adult congenital and adult acquired. This was not helped by your reference to two hospitals that do not treat congenital heart patients.

By the current proposals patients will be travelling no further than they already are for routine outpatient appointments. This service is staying at Manchester. It is for Interventional Procedures that further travel will be required.

Ok, we are going to have to agree to disagree on the cost cutting exercise. I have to the point I am willingly given the evidence in favour of a hub and spoke system which is overwhelmingly positive and demonstrated to have a significant impact on outcomes in many countries. This was the main aim of the proposals.How much the proposals achieve a similar outcomes will depend on getting the decisions about where should treating right and unlike the Major Trauma system a far more difficult to identify as factors are more subject to opinion. I have to say I disagreed with some of the proposals here. However, I can not comment on whether Manchester's decision to suddenly cease their service was based on cost it may well have been a factor.

The ten year process I alluded to (it is actually nearer 18 now as it started in 2001) was not actually coordinated by our government a majority of it has been independent inquiries where a large number of the reporting body have been doctors treating either paediatric or adult congenital heart. In fact the findings of Safe and Sustainable are identical to the Kennedy Inquiry- the Kennedy Inquiry was a public inquiry in which the government have no hand in nor can be influenced by funding. Clearly unlike the Hillsborough public inquiry nobody can act on it recommendations of the Kennedy report because of the politicised "not my local unit." To an extent I think it is sad that nearly 20 years later independent panels continue to come to the same conclusion.

The proposals do try to evaluate the impact on the lives of people with congenital heart defects- although in responding to the proposals I felt the the evaluation was far too simplistic. However, this is why they have put so much effort into the public consultation as we are the best people to answer that question- in fact of all consultations NHS England has ever had this is the one that has had the most money investment in reaching stakeholders.

The way Manchester ceased its service giving patients a moments notice (and I suspect from my earlier experience that they knew it was coming about 3 months before) I find completely disgusting and outrageous. I really feel for you stress right now. Anything I have written here is just because I really did my homework before responding to the proposals and do find that very often people bash the proposals as a cost cutting exercise and do not realise the same finding have been presented by independent bodies for nearly 20 years. [A bit like the number one google search in the Uk 24hrs after the EU Referendum was 'What's the EU?'] There is far more to the proposals than cost cutting. Not sure I can say the same for Manchester's decision to cease its service.

[Julel]

You have made valid points, some of which I fully agree with. My points have obviously been too simplistic, and for this I apologise. I used Tameside and Wythenshaw as they are my nearest alternative hospitals; I was not aware that they do not offer the treatments and procedures involved, but I should have checked this.

I have found your comments thought provoking and interesting, and plan to do a lot of further research, thank you for information you have offered - even if we do not agree I have found the debate stimulating.

[Midgeymoo17 in reply to Julel]

There is absolutely no need to apologise. In fact it only when I saw that 1hr lecture by Professor Elliott did I really begin to dig a little more into where and how these proposals came about so you are in good company there. I was only trying to stimulate healthy debate as I know from my volunteer work with charities treating congenital heart defects this is often the only way to reach the best decision as one person is unlikely to think from all angles/ or in this case all the logistical issue that can occur with a surgical mission.

While I tried to avoid giving my specific opinion on the specific proposals what I think is that the reasons for the creation of the proposals and the fundamental principals on which they are based are right (i.e.:the need to ensure surgeons are performing enough proceedures for the experience hence the need to concentrate centres) but I was far from convinced by the rationale by which they choose the centres. It just seemed rather simplistic and by my recollection actually made no convincing growth projections for the centres to see if they would meet the requirements. Nor did I see much evidence of evaluation as to how other centres were going to expand to meet demand.- So i certainly did not consider them perfect.

I also apologise for my comment about Wythenshaw. Although I was correct, in that it does not treat or monitor congenital heart patients due to not being a specialist centre or out reach clinic, if my memory serves me right it is the North West heart transplant centre so will do the heart transplants for congenital heart patients on behalf of the MRI.