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Centres of Excellence - Action Duchenne meets Minister

  • September 17th 2008
  • Posted by Nick Catlin at 17:39pm

I was part of an Action Duchenne delegation that met with Scottish Health Minister Shona Robison on Tuesday 16th September in Edinburgh.

Despite invitations to attend The Muscular Dystrophy Campaign and representatives from the Scottish Muscle network decided not to come with Action Duchenne to meet the Minister. The reason that they did not attend was made clear by Shona Robison as she produced their collective agreed plan for implementing medical care for neuromuscular diseases through a virtual network in Scotland that we have opposed. I have copied the schematic diagram tha Shona gave us here to show you what we were asked to comment on.virtualnetwork (Virtualnetworkscotland.jpg)
Stephen Lynn from Treat NMD explained that they would be publishing internationally agreed Standards of Care (SOC) in the near future and asked for endorsement by the minister for our DMD Registry. He gave the minister a copy of the Treat NMD open letter. (download from our library)

I pointed out to Shona that the key pre requisite for implementing these SOC's will be a multi disciplinary team of clinicians and health professionals with Duchenne expertise. This is why Newcastle and Great Ormond Street (previously Hammersmith) work so well. When my son Saul was diagnosed the first thing that I wanted was expert help and medical support. Janet and I went to the Hammersmith straight away. There is no provision in the MDC/Scottish muscle network model here for building a multi disciplinary team at the hub of the service.  Why should families in Scotland be denied access to a Centre of Excellence within their own Health Service?

I explained that this model was more of the same that had failed Scotland for 10 years and had left young people with Duchenne dying earlier in Scotland than in Newcastle over the border. How poor Carol Longman was going to be rushing around Scotland from clinic to clinic providing clinical support for Duchenne and other patients with neuromuscular diseases was also beyond me. I hope Carol has a helicopter!

But seriously this model is a recipe for failure. Just as a similar model in Wales has also failed and has now closed. We do not need virtual services we need expert clinicians, cardiologists, respiratory consultants, physios, OT’s, speech therapists, clinical psychologists, orthotists, wheelchair provision and so on in a centralised team that builds up expert knowledge of Duchenne and offers the highest quality medical care. Duchenne families in Scotland must be able to visit this centre of excellence at least once every 6 months. The centre should be run by a leading neuromuscular expert and be linked with academic research groups in Scotland (Edinburgh and Glasgow.) We know that this is what Scottish families want as many of them are going over the border to Newcastle.

OK so Shona asked us how we link a hub like this to local services across Scotland. A good point and we know that visiting Great Ormond Street or Newcastle is one thing but when you get home to Rotherham or Waltham Forest where I live there are no speech therapists and its pot luck with Physios and OT’s. How effective are Centres of Excellence when your son goes into Whipps Cross Hospital A&E in respiratory failure?

There is not a simple solution to local service provision. Duchenne is a rare and very complex disease and there will not be specially trained Duchenne experts in your local NHS service. So we must start by all families having access to a Centre of Excellence within 50 miles of their home. The Centre of Excellence must have the quality and numbers of staff to provide clinics and outreach resources. In their recent survey (State of the Nation) the Muscular Dystrophy Campaign show how medical care services are a postcode lottery and we agree as that is the experience regularly reported by our Duchenne families. But the answer is not to start with 50 care support officers funded by the NHS across the country. They will simply find out what we already know that we can’t get easy access to local support.

We should start with advocating for 6 new Centres of excellence along the Newcastle/GOSH models and beefing up these teams to include not only clinic day staff but drop in centre teams and outreach provision. These extra properly trained physios, speech therapists, teachers, OT’s, medical nurses can advise schools, GP’s local health care providers and also help to fill in gaps of local provision. This is what Michelle Eagle and Louise Hastings, for example, do so effectively from Newcastle across the North of England. (I’m sure they could do with a much larger team). 

I am not against the idea of more help on a local basis but it must come from the multi disciplinary teams in the hubs of a Centre of Excellence.
Centres of Excellence also provide us with expert guidance that we can use to ensure we get access to whatever local provision exists. I have used letters from Great Ormond Street to help with Saul’s statement and to get him a full time teacher’s assistant. The letter forced the local authority to comply otherwise they knew they would lose a tribunal.

If you look again at the virtual model then why not make Edinburgh the natural hub and build a Centre of Excellence attached to research groups at Edinburgh University?  This would also give Scotland a Centre to run clinical trials for Duchenne gene therapies and drugs. This would give a large proportion of the Scottish population in the central areas immediate access to within 50 miles of their home. Such a centre could then begin to provide outreach support to Aberdeen, Dundee, Inverness where there seems to be some very basic provision already in place.

I think Shona listened and will consider our arguments.

She also told us that they agreed £16m of new investment in wheelchair services. We hope that some of that gets to Duchenne families for the stand up power chairs our young people so desperately need.

They are also reviewing the Housing grant to families and are proposing a new package of £30K or up to 100% of cost. We have lobbied for these two years ago and would welcome this real improvement.

Shona also spoke about the need to improve24/7 carer support for older men living with Duchenne.

It’s very disappointing that the MDC and the Scottish muscle network continue to go their own way over lobbying for improved provision in Scotland (and Wales and England) and are promoting a model that simply will not work.

Action Duchenne is very clear that loose virtual networks are not the way forward and indeed will continue to lead to poor local services and our sons dying younger than in areas with expert multi disciplinary teams. We will work to continue to lobby for the best medical care and support for our young people and as always we welcome the opportunity to join with all organisations who are willing to do the same.

3  Comments


  1. Paul Ackroyd
    September 17th 2008
    18:41pm

    I agree with Nick's comments, particularly the idea that 50 new care or support co ordinators will lmake any difference. Adding another layer of essentially administration simply won't work. We need more centres of excellence in England and Wales and I cannot see any justification for Scotland and N Ireland being without one at all. Frankly it is criminal and a disgrace to Duchenne sufferers and their families. When I hear of people having to fly from NI to Newcastle to get needed specialist treatment I am appalled. From an "activist" perspective the more people that transfer to Newcastle and Great Ormond Street the better. I know it is costly and often extremely inconvenient but we have to "vote" with our feet. Those 2 centres will become overstretched and may have to turn new patients away, which would be potentially politically damaging. This could force the move to open other centres, or I suppose force an increase in staff at the existing centres. We would of course lobby for the former. So far as Scotland is concerned the disparity in life expectancy must be highlighted (I wasn't aware there was one before this week) and has to be addressed. Surely this would be extremely news worthy?! Addressing the problem I am sure won't be easy as Scotland's beauty lies in its vast open and remote areas, but surely centres of excellence must be established in at least a few major cities! Likewise for Northern Ireland! The bottom line is that we must demand the best care and health provision for our children and adults with DMD. I cannot praise the people up at Newcastle enough with particular mention of Prof Volker Straub and Dr Michelle Eagle who we saw on our first visit and who I believe are exceptional. I really do believe it has made a difference, particularly on the physiotherapy side which is so important. It is a 3 hour journey each way for me but worth every minute fo the travelling time! Paul Ackroyd

  2. Paul Fitzpatrick
    September 18th 2008
    08:55am

    What do you do when a system has failed? you revamp it wrap it up in some new way,cross your fingers and hope for the best! the probelm is that this is not some new way of doing your shopping or buying a car it is a sytem that will set in stone for years to come, the way young people are given life saving treatments,advice and of course will impact on your quality of life and yes! " how long you will live" it is as important as that. Ask yourself this...why is best practice for us in England to access the best care and treatments linked to research facilities at Newcastle and GOSH, for people in the other parts of the UK it is not? are we built differently? is the air different? are we better at fighting these awful diseases? of course not the only answer is that people living in many parts of the UK are being let down by at best a patchy system that has failed them for years and will continue to do so.The answer is to expand the Centres of Excelllence we already have in England to a minimum of 6 , put in the resources to save lives in the rest of UK as well by putting us all within 50 miles of one of these life saving facilities. Regards Paul

  3. Ian Griffiths
    October 01st 2008
    01:17am

    I Live in Wales and much like Scotland, services are pretty much non-existant. Thus life expectancy is appalingly low. This virtual centre sounds like a political soundbyte, where it looks like their doing something, and a lay person would think how wonderful its being done on the internet, how modern. In reality its just red tape being shoved into cyberspace, our disease is not a virtual problem, it is very real. We need centres of excellence right now, the government is all to keen to use pfi (private funded initiatives) to build schools and academies. Why not use something like that for our centres of excellence, get big business involved, then the nhs need only concentrate on finding and training experts on duchenne's in their respective fields. Thats my two pennies.

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