A call for DMD specialists to join us at the lobbies!

The annual lobby events are coming up soon. These events are held throughout the UK: at Westminster on the 13th June, Holyrood on the 6th June, Stormont on the 18th of June and the Welsh Assembly on the 11th July.

These lobbies are not ceremonial. They are a chance to get our message, that people and families with Duchenne need better standards of care, allocated funding for coordinated research and a higher quality of facilities, across to those with the ability to see such changes introduced.

With your experiences of duchenne, the NHS and the care you require, you have become a specialist. You know, more than any minister or GP, what changes should be made so that you can get the quality of care that you need. The more experts that come and tell their stories of non-integrated care and poor facilities the more pressure is applied for these issues to be faced up to and tackled.

If you would like to come and join us, you can fill in the form found at the bottom of the lobby pages on the Action Duchenne site (see above). If you need any more information on the lobbies or getting involved with campaigning please contact us at Eilidh@actionduchenne.org. We all hope to see you there.

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All Party Parliamentary Group on Disability 24th April

Chair – Anne McGuire

Main speakers – Maria Miller (Disability Minister), Hailey Jordan (Disability Benefits Consortium)

On the 24th of April the All Party Parliamentary Group on Disability was held at Westminster. This came just four days after the Department for Work and Savings announced the companies that will be involved in the bidding for contracts to deliver the controversial Personal Independence Payment (PIP) assessments. The list of companies includes G4S, Capita, Atos, Vertex and Serco.

Hailey Jordan began the meeting by expressing concerns that the reforms to DLA were undertaken with 20% savings as their main goal. She said that this would lead to 500,000 people losing their benefits – affecting their health, independence, quality of life and the lives of their families and friends. She also mentioned the ‘unnecessary and costly’ mandatory face-to-face assessments for everyone and the threshold criteria for certain conditions. These threshold criteria fail, in her view, to take into account short term and fluctuating conditions as they maintain that conditions must have an impact on the individual for more than 50% of days over a year.

Maria Miller then replied with a summary of PIP and its far greater targeting abilities in comparison to DLA. She held that the descriptors and weighting of descriptors were currently being looked at with the help of organisations like the Disability Benefits Consortium and that fluctuating conditions would be pinpointed ‘most of the time’.

The discussion then turned to the providers of the assessments, with questions surrounding the companies’ history and their qualifications for providing these assessments.  Rahel Geffen, CEO of Disability Action in Islington spoke of the ‘horrific experiences’ which disabled people had encountered with Atos and said that she had a real problem telling service users that they are safe in the hands of assessors.  It was also highlighted that G4S and Vertex have chequered histories with statistics and quality.

Further questions surrounded the expense and stress involved in face-to-face assessments, medical evidence availability – which requires improvement, access to work – which must be protected and the need for specialist knowledge in all assessments.

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Action Duchenne: National Meeting. 21st April, Birmingham Hilton Metropole Hotel

By Andy

On Saturday, Action Duchenne held its National Meeting in Birmingham. The meeting consisted of talks on research, standards of care and campaigning in the morning and then workshops in the afternoon.  These workshops covered the ‘Takin’ Charge’ and ‘Letting Go’ projects, internet safety, Decipha and campaigning goals and strategies. A run-down of the agenda can be found here.

Meetings like this are for families: to keep them up to date with research, help them realise the standards of care they should expect and to involve them in campaigning for more research and better care. They are to help families meet others in similar situations and consult specialists. And they are an opportunity to socialise with others who are involved in and passionate about tackling Duchenne.

The day was a fantastic success. The impressive turnout was complimented by the enthusiasm and knowledge of the speakers and families. In what was quite a packed schedule, there was still a great deal of time for families to meet other families, medical and care specialists and Action Duchenne staff. This gave everyone an opportunity to swap information and find out about the experiences of others.

The morning’s talks on research by Nick Catlin, Dr John Bourke and Dr Keith Foster outlined the stages of research for various treatments for Duchenne as well as the most recent results. Current medical trials were also highlighted. A session on Quality of life issues was chaired by Mark Chapman who is an adult living with Duchenne with contributions from Janet Hoskin from Takin’ Charge and Decipha, Celine Barry from Takin’ Charge and Stuart Hatton a young person living with Duchenne. Dr Ros Quinlivan of GOSH and Neil Williamson from Richard House hospice gave presentations on how to get the best quality of life touching on issues such as standards of care and person- centred planning.

The last session before lunch focused on campaigning. How to engage Government and Regulatory authorities toward achieving Action Duchenne’s goals was discussed by Kathy Weddell from the NAC, Eilidh Macpherson, Action Duchenne’s Campaigns Manager, Iain Clarke, RDO Action Duchenne and Weber Shandwick (political consultancy firm). These talks highlighted the need to get involved in campaigning oneself and the importance of campaigning for change in relation to standards of care one should expect , research funding and implementing new treatments.

Informal workshops were held in the afternoon in which families could consult with experts on a range of subjects. The biggest success of the day, we felt, was the way that families could interact, bring up issues and tell their own story to one another and to specialists. We thank everyone for attending and hope that they enjoyed the meeting as much as we did.

We would love to hear your feedback on the day: what you felt was good and what you feel could be improved. If you missed out on the day and would like more information about the event as well as upcoming meetings then please also get in touch with eilidh@actionduchenne.org. If you would like to sign up or get more information about Action Duchenne’s Transition Project called ‘Takin’ Charge’ please contact janet@actionduchenne.org or celine@actionduchenne.org

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UK Consultation on Rare Diseases

By Samantha Reeve, Rare Disease UK

Following the European Union’s recommendation for action in the field of rare diseases, the UKs four health departments collectively launched a public consultation on a UK plan for rare diseases in February (You can download the consultation document here).

The consultation is an opportunity to create a coherent plan for care and support for those with rare diseases such as Duchenne Muscular Dystrophy where there hasn’t been one before.  Currently many individuals have difficulties accessing high quality care and services, in many cases due to the lack of communication and coordination of services that are sometimes already in existence. Due to the rarity of many conditions health professionals often have little or no experience in supporting patients in order to find optimum care pathways which can often be difficult or impossible.

However the consultation document paints a very optimistic picture of care for those with rare diseases in the UK. The consultation is complacent in areas such as training and often only focuses on trivial issues rather than focusing on providing a strategic plan for rare diseases.

To have a real influence over the plan it is essential that as many stakeholders as possible make their views on the consultation clear before on the consultation deadline on the 25th of May. The more people respond to the consultation, the greater input stakeholders will have and the greater pressure upon the health department to deliver an effective rare disease plan.

In order to create discussion around the consultation and to hear your views to strengthen our own response, Rare Disease UK are holding a series of stakeholder engagement events and webinars. The details of which are outlined on our website.

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London Wheelchair Access – Snapshot of a Family Trip

By Kathy Wedell,

A day or so after Channel 4’s No Go Britain campaign on April 4th, we set out on a family trip to see the sights of London – my mum and I on legs, my eight year old initiating his wheelchair.  We did a survey of wheelchair access, scoring on two counts:  accessibility, and attitudes of personnel, with later a bonus category of ‘stupidest obstacle’.  On a scale of 1 – 5 where 1 is low and 5 is top score, these were our findings:

  Personnel Access Comments
Oxford station departure 5 5 Timely and proactive support
Paddington arrival 4 2 Significant wait to get off
Paddington mainline station 5 2 Steps and not enough information
Sheldon Square n/a 1 Steps to shops
Hotel 5 4 Helpful staff, slightly disabling building
Paddington Underground station 5 1 Helpful staff, some platforms inaccessible, train inaccessible from platform
Public toilets, Westminster 5 2 Have to get a key and poor access for this
Boat trip on the Thames 5 4 Boat access level but no ramp for boarding
Bus 4 2 Hard to speak to driver, back door access
Pavements n/a 4 Almost always dropped kerbs
Restaurant 4 1 Quite helpful staff, inaccessible toilets
Westminster bridge n/a 2 No direct access to river bank
London Eye 5 5 Inclusive access as standard – a joy!
Paddington departure 5 3 Delay in getting ramp
Oxford station arrival 5 2 Significant wait to get off

Let’s fill in some of the detail: 

After arriving from Oxford by train at Paddington Station, we tried to take the direct route out of the station to our hotel off Sheldon Square.  We followed the signs and did fine – up in the lift and across the upper level – until we got to the current station building works, where you can’t avoid fourteen steps.  We also tried to get out of the station on the advertised new step free access to the new taxi ramp, but then discovered that that route is only to the taxi ramp and is not a general exit.  The only step free way to our hotel from Paddington Station is out of the front exit and right around the whole station complex.

Inexperienced fools that we were, we then attempted to use the London Underground.  Top-scoring lifts and wide access at Paddington brought us to:  steps to the westbound Circle Line platform.  A helpful and sympathetic station official explained that there had been plans a few years ago to provide step-free access, but ‘the money dried up’.  He advised us to go east to Baker Street and change to the Jubilee Line.  But we soon saw that even if you get to the platform, you can’t get on the train – a gap and a step up block your way.

Switching to the bus, we found that access for us was through the back door – a ramp emerged emitting a bruuup-bruuup like something out of Dr Who.  You have to let the driver know your destination before you get on, because once in situ at the back of the bus that is almost impossible.

For access, top score goes to the London Eye, for inclusive access as standard.  Lowest score goes to Sheldon Square, where impressive, or rather, unimpressive, steps lead down to the shops.

Time and again, the people we encountered couldn’t have been more concerned to be inclusive – and top marks here go to the hotel staff at the Novotel Paddington who asked if we needed a hoist to enable my son to access the swimming pool.  But time and again, the designers of public space simply hadn’t adequately considered users of wheelchairs (and often users of other kinds of wheels as well e.g. prams or heavy luggage).  The hotel pool would be inaccessible to users of electric wheelchairs because the access corridor is too narrow.

Some facilities need updating – almost all of the London Underground for a start.  Sometimes ‘access’ is demeaning or inconvenient – arrivingat Paddington on the train, and again arriving back at Oxford, we were the last to get off the train after a lengthy and anxious wait while platform staff organised themselves to get a ramp.

To get around London in a wheelchair you have to know where you are going and plan ahead in detail, very often impossible due to inadequate information.  Forget being in a hurry and good luck to you if you don’t have ambulant people with you.

‘Stupidest obstacle’ top award goes to Westminster Pier:  completely level access is blocked by a set of apparently useless steps going up and then down, the sign to wheelchair access round the side so small and obscured by people that we didn’t see it.  Runner-up award goes to the bollards by the bus stop along Grosvenor Place (the key stop for Buckingham Palace).  Unless the bus is perfectly aligned, the ramp hits the bollards as it comes out.

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Sun, Sea, Spaghetti, and Specialist Multidisciplinary Neuromuscular Centres

By Kathy Wedell,

In March four of us from Action Duchenne went to Ancona on Italy’s Adriatic coast, to check out Italy’s multidisciplinary neuromuscular centres.  Funded by the European Commission, this visit was part of the ‘Professional Parents and Patients’ project, in which families, people living with Duchenne muscular dystrophy, and professionals from four European countries (UK, Romania, Italy and Latvia) visit each country in turn.  The aim is to develop international links and to share and exchange best practice.

Our visit was hosted by Roberto Penna, Research and Innovation supremo at Ancona’s Riuniti Hospital, whom we had already met in Romania.  We also had a happy reunion with other Romanian, Latvian and Italian colleagues and met Filippo Bucella, CEO of the very strong and active Duchenne group Parent Project Italy.  Our work focussed on multidisciplinary neuromuscular care in Ancona’s children’s and adult hospitals.

While it was difficult to get an overview of Italy’s provision in such a short time, coming from the pitched battle for the soul of the NHS going on in the UK what struck me were the following points:

  • Italy has a free national health service
  • It is provided by the state and run at a regional level
  • Each regional health authority has responsibility for and an overview of healthcare in that region, including care for neuromuscular conditions
  • There is a compulsory national registry of people with neuromuscular conditions, giving health authorities a very clear overall picture of the population with neuromuscular conditions in their area
  • There is some delegation to private clinics, but this is within the overview of the regional health authority.

Ancona’s adult hospital has the regional neuromuscular rehabilitation centre.  Here I was struck by the clear organisation of their work:

  • Clear goals summarised as optimal independence in five areas including ambulation and breathing
  • Professionals with clear responsibility for each goal
  • These professionals working together in a team overseen and directed by a single care manager, almost always the neurologist.

Life expectancy for people living with Duchenne muscular dystrophy in Italy has risen by an average of ten years, due to ventilation and timely prevention work by multidisciplinary teams.

 

 

 

I brought back wine, pesto, and metre-long spaghetti.  If only I could also have brought back full multidisciplinary specialist care teams for each region of the UK.

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Leaked Risk Register

By Andy

Yesterday, a draft version of the Health and Social Care Risk Register was leaked. Dated the 28th of September 2010, this risk register was drafted 4 months prior to the publication of the Health and Social Care Bill. Since then, the Bill has been amended a great deal. Therefore, the Bill that passed last week is different to the Bill that was reviewed in this leaked risk register. However, many of those who opposed the bill have had their concerns ratified by the number and likelihood of high impact risks.

The leaked document highlights ‘high impact and likelihood’ risks surrounding cost and financial instability, the inability to cope with emergencies and the resulting system being too ‘difficult for the public to navigate or hold to account’. Also pointed out were potential problems with staff morale, bad publicity, internal breakdowns in communication, transition costs and union activity.

Both Andy Burnham MP and Liz Kendall  MP have both proclaimed this risk register as an indictment of the bill, while John Healey MP stated that the information provided by this document should have been made available while the bill was being debated. Roy Lilley, the health writer who the bill was leaked to, told the BBC that ”Ninety percent of the risks that were identified in this September document have manifested or are manifesting now.”

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Emergency NHS Debate and the passing of the Health and Social Care Bill

Yesterday afternoon a debate took place in the shadow of a report by The Royal College of Nursing which described care for the elderly as “shocking” due to a lack of nurses. Half of NHS staff said they cannot complete all of their tasks because they ran out of time. Having said this, almost 90% said the quality of care they provided was satisfactory.

The emergency debate began with an address by the Shadow Health Secretary Andy Burnham. He said that one of the best health services in the world is being inexplicably dismantled and that the changes in the NHS are already driving up waiting lists. This “reckless” reorganisation, Burnham stated, is being done without disclosing all the relevant information and called again for the release of the transition risk register. Burnham finished his opening speech with the statement that Labour has fought the bill as hard as they could and would repeal the bill at the first opportunity.

Dr John Pugh MP, a Liberal Democrat opposed to the bill, focused on the risks that the bill was taking given the timing, speed and extent of an unpopular reorganisation of the ‘incredibly precious’ NHS. John Healey MP then took the debate back to the public’s right to know the risks to the NHS. He stated that ‘risks have been, are and continue to be the most important aspect of passing this bill’.

David Anderson MP stated that this whole debate was about Government showing contempt: Contempt for the public who signed e-petitions in their hundreds of thousands, contempt for the tribunal and information commissioner over the risk register and contempt for the people who deliver NHS services by believing that they know better.

However, after unprecedented numbers of amendments and 14 months, the Labour call to postpone the NHS bill was defeated by 82 votes meaning the bill shall become law by Easter. This is a helpful run down of what the bill now comprises of and here are a summary of the plans for the future of the NHS.

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NHS Reforms: Emergency Debate

By Andy

Yesterday the Health and Social Care bill survived its final reading in the House of Lords. Lord Owen’s call for a delay to the bill’s third reading in the Upper House until the risk register is released (after a tribunal ordered it to be published) was defeated by 328 votes to 213. Labour peer Baroness Thornton’s motion to drop the bill was also rejected by 269 votes to 174.

A number of amendments to the bill, which were championed by Shirley Williams and were seen to limit competition and clarify certain parts of the Secretary of States responsibilities, have made by the bill more acceptable to many. However, this bill is still highly contentious, with candlelit vigils held throughout the country last night and Lord Greaves describing it as a “radical top down reorganisation imposed on the NHS at the same time it is struggling to cope with financial problems”. Indeed only last weekend, the Faculty of Public Health, an organisation representing 3,300 public health specialists, released a damning report on the bill. It held that the bill poses a real threat to “people’s health and patients’ experience of care”.  It holds that competition in the NHS will lead to problems for those requiring joined-up and coordinated care.

Using diabetes as an example, Dr John Middleton, vice-president of the FPH, said: “”Under the new system they may need to go to the NHS commissioning board for GP or optometrist care, the CCG if their hospital service or chiropody causes them a problem, Public Health England for their eye screening and the local authority public health service for their weight management and lifestyle services – it’s a recipe for uncoordinated care and everyone passing the buck”. The FPH have now joined other medical organisations in calling for the bill to be scrapped.

Today, there will be a 90-minute emergency debate on the need to publish the risk register. The Government are refusing to publish until the principal judge at the tribunal – John Angel – releases his reasoning. At the end of the parliamentary session this afternoon, if the bill is approved, it could become law next week.

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Crucial Day for the NHS

Today is a crucial day for the NHS all of us who have been campaigning against the Health and Social Care Bill.

Today is the last day that peers will be able to scrutinise the bill – you can follow the developments on the guardian live blog throughout the day.

In a statement today, BMA council chairman Hamish Meldrum said:

‘We’re in the end stages of the legislative process now and it’s still not too late for parliamentarians to do the right thing.
‘Despite even further amendment, there are still many unaddressed concerns about the high risks this bill poses to the NHS, and it is clear that it is not fit for purpose.
‘It is time for parliamentarians to put aside party politics, listen to the concerns of almost everyone working in the NHS and withdraw this bill.’

Demonstrations will be taking place around the country tonight, if you can join one near you please do.

If you still haven’t signed 38 Degrees petition, it only takes two minutes, almost 600,000 people have already take action, and with cross-bench Lord, David Owen, agreeing to receive a copy of the Save Our NHS petition,  every extra signature is important.

 

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