Invest to Save

Robert Meadowcroft, Chief Executive, Muscular Dystrophy Campaign, WELSH FOCUS CONFERENCE April 4, 2012

ROBERT MEADOWCROFT:
Bore Da, good morning ladies and gentlemen.  My thanks first to Henry and Damien for the opportunity to speak this morning.

I am delighted to be here, I am told it is a lovely part of the country.  With the low cloud and the rain, I haven’t had the benefits yet.  I am looking forward to seeing more of this beautiful part of the country.

I congratulate you on the launch of the organisation; the conference today is a really important conference and full marks and full credit to you and Damien for putting it together with your team.

Thank you very much for the chance to speak.

What I want to do is to just a couple of things by way of introduction about the muscular dystrophy, I have been the Chief Executive for almost 18 months so I want to say a couple of things about that and about muscular dystrophy itself as a group of conditions, then talk about invest to save and the importance of this piece of work, this initiative.  What it means about enabling change to take place in health services through in effect recycling money that is being badly used at the expense of people’s health and well-being.  So I am just to make the case.

About the charity, we have been around some time, formed in 1959, a long established charity, good Welsh roots, formed by parents of children with the condition, brought in a leading scientist to look for ways in which muscular dystrophy can be beaten through research and better care.  We used the term muscular dystrophy, refers to muscle wasting conditions, no cures, the majority genetic, over time, they can be life limiting and shortening and cause severe and progressive disability and the charity has set about doing what it can to build a coalition of supporters to win the fight against these conditions.

We are a membership organisation, a democratic organisation, controlled by our members through annual meeting we have a board of Trustees elected by the members.  I would say we are an open and caring charity, accountable.  We are facing problems in the current economic climate not surprisingly, I think all organisations, all charities are no exception to that.

We take on the fight in different ways; advocacy is important, enabling people to get their rights, whether it is rights to benefits, care packages, to independent living, to enable people to live the kind of life they choose to lead.

Employment is very important isn’t it?  Employment both for income terms, as a means of self-determination, being in control of your life and I agree with earlier speakers that the media portrayal of disability is becoming more and more difficult and we have a young campaigners group in the charity, the trail blazers and when we formed this group and when we gave these people across the community, we thought we might get a hundred across the UK, principally with muscle wasting conditions, more than 400 of them young people, fired up with a passion to overcome the discrimination a place.  For this charity to support them, is one of the things I am most proud of, you will know what I mean, not in a patronising way or condescending way, in what they do, taking the surveys, taking them into parliament and Assemblies to express their views themselves.  So the charity can do that, we can give people a platform to do that.

We do that to in terms of the media, so we can enable people and support people to put their own voice to the media and I think you referred to Ray Thomas, he is the chair of what we call the Wales muscle group and it is a campaigning group.  Ray has spoken on television several times, on the radio and in the media; working with Ray we can enable him to have his voice, putting his issues forward in the media which is important.

We have an effective cross party group in the Assembly and we have been fortunate because we launched our first report highlighting gaps in care services in Wales in 2008 and I recall Rhodri Morgan came out and we took the report inside and with other AM’s.  Led a cross party group.  They are genuine cross party groups and we are very pleased to have representation from all the parties in taking the fight forward.

So we have had several steps on the way, our first building on the foundations report 2008 the Thomas report, highlighting gaps in services.  In name because of Ray’s huge contribution to our work in Wales was 2010 and then invest to save in Wales our report published towards the end of last year, 2011 and these to my mind are milestone reports.

Highlighting the progress that has been made but the further work that needs to be, needs to take place now.  I say progress has been made, when you start from a low condition, when the conditions have not been recognised for the severity they have and the life limiting of the conditions, when I have to say Health Boards, the Welsh Government has not given neuromuscular conditions any kind of priority that we start from a low basis and I know if I was to go back before I joined the organisation to the late 90′s, there was some very good specialist services for people with muscular dystrophy in Wales, principally in Cardiff, spreading out across the country.  They declined because nobody thought to put a plan in place to maintain them or develop them.

So, we the charity said, this is not acceptable, our members certainly felt it was not acceptable, people living with the conditions, I hope we have worked effectively to take this forward.  Now 3 care coordinators one of whom is here with Ray today.

We have some an increase in physiotherapy services.  But it is just the start to put people living with these conditions to make sure they have the same access to good quality care and support as people with other conditions.  Although these are rare and very rare conditions that is not to say, they should not have priority or should be overlooked.  You can imagine when I have heard health commissioners, public officials say to me, your services don’t have priority, we are not going to do anything to improve them or maintain them.  You will appreciate I say, I will not accept them.  People with muscle wasting conditions have no priority — so we set it up working with people to sort it out.

That was my preamble, the first part of my talk.  Move on to invest to save, you will see my thinking.

We have been building, if I use the term coalition, it is not a word I can use comfortably anymore.  Let me say this, we have been putting together I hope a powerful force to enable people living with these conditions themselves to make their case for change for service improvements.  I can use a term social movement which sounds grand U it is not my term, the commissioner for the west Midlands, you have created a social movement we have brought together people working with the conditions, politicians, commissioners and used the media to highlight what should be done.

He said that is a social movement.  We are obviously here in Wales, Northern Ireland and England.  We have been taking these issues forward.  The challenge we face is that the NHS understandably is very stretched despite its huge budget is stretched because of the pressures that it faces and we accept that.  We understood that there would be.

The potential for making cost reductions by improving health care and reducing the expensive blue light emergencies when people are rushed in facing a crisis, whether it is respiratory, cardiac or following a fall, all these happen to people facing muscle wasting conditions, we estimate that 20% of the NHS spend could be saved by better prevention and planning and being aware of the risks that people face living with the conditions.  It is fair to say that the NHS was sceptical of our argument and members.  We were persistent and maintained the argument that 20% of blue light emergencies for people living with muscle wasting conditions was avoidable and the money should be saved and reinvested into services.

The NHS decided to fund a study led by a leading muscular expert based in London to look at the problem and to see what the data are for the cost and numbers of unplanned admissions.

So professor Michael Hannah at the hospital in London was commissioned with about £60,000 of NHS funds to look at the data for unplanned admissions.

In a sense, the NHS in a sense was right that the numbers were using, we said 20%.  Professor found that 42%, 42% of emergency admissions for people with living with neuromuscular conditions were unplanned – the total cost in the UK of unplanned admissions is over £80 million.

So, without being a mathematician that is a huge sum.  Extrapolate that number to Wales as well.  That is an unplanned admission?  I have got some data from the study in front of me.

Some admissions obviously are unavoidable.  He gave them, appendicitis, might have a form of muscular dystrophy, append site, you can’t anticipate.

Others are avoidable.  There are warning signs of deterioration, so a good clinician, seeing the patient, regular check-up.  Good diagnosis, regular check-ups.  Good clinician can see the warning signs of deterioration, monitoring of disease progression, looking at action to prevent the difficulties and the emergency plan should be put in place, and emergency plan for when something starts to go wrong.

How did the study work?  How did professor and his group set about the study?  Employed a full time researcher to do the work.  They went back through a patient records in London and the southeast identifying emergency admissions then the categorised them which would be planned, which are unplanned.  Then ruled out things like appendicitis.

So they were left with 200 patients in the group, 200 people who had between them 266 admissions.  So 200 patients had 266 therefore some had more than one.

Of those 181 patients were known to have a condition but 85 on admission were not already diagnosed with the neuromuscular condition.  So poor diagnosis, poor referral, GP’s not recognising, not sending people through.  That is one of the things coming out of this.

Further, if you look at those that are known to the service and those that are not known, right.  So of 181 people, so, there were 266 admissions, 181 of those, those patients were known to the service, their medical records said this person has a muscular dystrophy or related condition.  Of the 181 only 131 were currently seeing a specialist, currently known to the service, currently known to the service.  That is the problem, people are not being followed through.  People are dropping out.  People are not being referred.  It’s lack of access to specialist healthcare.  These are rare conditions.  70,000 people are living with poor muscular condition but it’s a group of more than 60 different conditions.

One of the most common conditions is Duchene muscular dystrophy.  2500 live with that, {inaudible}  2000 people in the UK have that.  But that’s rare in itself.  People need a condition be recognised referred and followed through.  The problem is file these are unplanned admissions people are not getting into the system or if they are dropping out through lack of care.  It sounds like common sense to me not rocket science.

I’m going to move on Henry if I may at a pace.

Prof. Hannah went on to say what should be done to prevent admissions?  He says avoidable admissions may have been prevented with the following measures.  Surveillance of condition.  I.e. regular check ups.  Access to neuro muscular services for specialist services.  Referral to allied specialities, allied specialities {inaudible} physiotherapy, speech and language therapy, dietician, cardiac specialist.  Behind the jargon of Prof. Hannah is common sense again.  See a specialist, get referred, follow through appointments.

Further, there is prevent delay and referral to specialist service. Prevent the delay to the initial diagnosis.  Even flags up patient education.  You can tell it’s written by a specialist.

If I talk about the arrogance of the specialist it’s not meant to be unkind.  People who are brilliant doctors sometimes not the best at communicating.  People who are brilliant doctors – Prof. Hannah is an outstanding doctor.  I work often with the assumption, Henry, patients are experts in their own condition, live with it every day, your family does.  You know how the condition affects you.  There is a 2 way process with a specialist.  But when we say patient education I know what he means we should be aware of the interaction and warning signs when they start to go wrong.

When they start to go wrong you should start to see the specialist not wait for a crisis.  The emergency plan should be in place and there should be provision of specialist equipment.  Things like cough assist machines can help clear the lungs, if you’ve got declining lung function and you have this machine it’s a relatively small amount of expense.  2 nights intensive care will cost that.  You can save people going in trauma crisis cost and expect and it is a cost saving.
So the conclusion? {inaudible} study were highlights – this is the largest study undertaken,  carried out in conjunction with NHS.

There should be continued data connection with analysis and summarises 42.1 per cent of all admissions were avoidable.  Another 4.5 per cent potentially avoidable.  To round it up, virtually half the emergency admissions in London and the south-east for people living with muscular dystrophies and related conditions were avoidable, and think about the crisis and trauma for families affected let alone for the cost.

Clear evidence related directly to the neuro muscular condition itself.  Then in summary the main reason for the majority of unplanned admissions was due to delay in access to neuro muscular services.  Lack of ongoing quote surveillance of the condition i.e. regular check ups regular visits to see the specialist.  Lack of emergency plan for patients and lack of provision of appropriate equipment.  We know what needs to be done it happens in the best places.  It should be extended taken out more widely.

Now the government here and the Health Service in Wales as I said at the start has made some progress in recent years and I recognise that and I am grateful but it’s still a long may to go here in Wales and people living with muscular dystrophy related conditions.

There are moves to have our own invest to save analysis unplanned admissions undertaken and I think that is being taken forward by Dr. Elin Marsh working with Dr. Llewellyn who are looking I think with the Welsh Government to take this forward now our own study here in Wales unplanned admissions.  I would be very surprised happily surprised if the data varies enormously following the data from London and the south-east.  Will they show a better or worse performance?  I don’t know.  Let’s have a look I think in that sort of ball-park.

I am very aware Henry in drawing my remarks to a conclusion that I focus to some extent on healthcare issues.  {Inaudible} also campaigns with social model of disability.  Right at the start about removing barriers and barriers to employment.  Barriers to leisure facilities.  Both to our trail blazers group and for the charities mainstream work as well.

We {inaudible} a report – we published a report on hate crime about 6 weeks ago.  Again, young campaigners did the field work on this and they gathered together information and data from their own experiences of hate crime.  And if you want to understand the down side of our open and free society I think the report on hate crime underlines this.  The fact that many of you here will know this first hand I fear, the fact that many people with a disability walking down the street or going out simply to take part in society can be abused or spat on, attacked verbally and in some cases attacked physically is an absolute disgrace in our society.  And our report from young campaigners the trail blazers group heard of their own experience.  Almost words begin to fail one when you think about this.  You think about other societies that went badly wrong in the 1930s.  Advantage Western societies. Probably a high level of unemployment.  Probably a high level of scapegoating taking place.  And to see to some extent some kind of parallel is very, very for me very alarming and I do think we as a society need to think about how to tackle these sorts of issues.  There are some serious issues underlying much of things taking place in our society that need to be addressed.  We as a charity will do what we can but we’re a small organisation, determined, passionate, I hope effective, we were awarded a campaign badge national campaigning charity of the year which as a small charity gave us a great deal of I say satisfaction not to pat ourselves on the back we’ve got too much to do but the sense that we’re doing something effectively that’s been recognised with a small team of staff and a very good team of staff.

I am happy Henry to take any questions of course and draw to a conclusion with a quote from my friend Ray Thomas.  All of Ray’s saying which again I will always quote and use is: the fight goes on and the fight does go on.  Diolch yn fawr thank you very much.  {Applause}