Category Archives: disability

by | March 25, 2013 · 10:36 am

Potential DMD treatments discussed in Science and Technology Committee

Science and Technology Committee, 13th March: Clinical trials
Witnesses: Professor Sir Michael Rawlins, Chair of Medical Sciences Regulation and Governance Review, Dr Keith Bragman, President, The Faculty of Pharmaceutical Medicine, and Dr Fiona Godlee, British Medical Journal

This discussion focused around barriers to clinical trials and included mentions of possible treatments for Duchenne Muscular Dystrophy.

It has been agreed that it takes more time in the UK to conduct trials than in other countries due to bureacratic systems.

The amount of bureacracy and the ‘one size fits all’ approach to all clinical trials led a an overburdensome system, Prof Rawlins argued giving an example of 62 CRB checks being done by 62 hospitals for one trial.

Graham Stringer MP, asked whether it was difficult to hold trials for Orphan drugs such as Duchenne, because it was so rare. Prof Rawlins answered that it depended on the situation, but that trials conducted by one centre of excellence can actually involve much less bureacracy.

The publishing of trial data, which is the focus of a current campaign by Ben Goldacre, was also discussed.

The Muscular Dystrophy APPG is currently holding an enquiry into research into the following issues:

  • Ways of speeding up access to high cost drugs for orphan diseases
  • The National Institute for Health and Clinical Excellence (NICE) taking on the assessment of very high cost, low volume drugs from the Advisory Group for National Specialised Services from April 2013
  • Setting in place a strategy to overcome potential barriers and delays
  • Impact of NHS reforms on the commissioning and funding arrangements
  • Challenges of delivering potentially costly therapies given the need for significant NHS efficiency savings
  • Organisations and determinants responsible for bringing drugs to the marketplace and their role
  • Views of people affected by muscular dystrophy and related neuromuscular conditions

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Filed under disability, Research, westminster

by | March 8, 2013 · 3:28 pm

Welsh Cross Party Group on Muscular Dystrophy

On the 6th March I attended the Welsh Cross party Group meeting.

This meeting was chaired by Bethan Jenkins AM and was attended by Dr Andrew Goodall (Cheir Executive Aneurin bevan Health Board and Chair of WNMN) and Dr Eleanor Marsh (Specialist Registrar in Neurology and Clinical Coordinator for WNMN). Healthcare professionals, Care Advisors, families and patients were also in attendance.

The meeting began with an update on the ‘Welsh Neuromuscular Network Vision’. This ‘vision’ aims to develop neuromuscular services, determine a strategic direction for neuromuscular services, share good practice and act as a reference group and resource for professionals across Wales; that is, this network’s primary aim is to raise standards of care and support to create an ‘equitable and accessible service for patients and their families across Wales’.

The hope is that a business case can be made for specific developments. This could lead to the creation of Service Specifications incorporating published Standards of Care and quality measurements to ensure equitable access to best quality services.

The update of the Neuromuscular Vision document maps current provision and describes areas which have gaps. Areas singled out as highly problematic are Transition, specialist physiotherapy and clinical psychology and counselling involvement.

The document calls for full time care advisor roles, the appointment of specialist adult physiotherapists, specialist consultants and a specialist neuromuscular pyschologist.

There is also a case made for shared electronic health records supported by an administrative network manager.

If you’d like a copy of this vision document please contact Andy@actionduchenne.org.

The Welsh Muscle Network are looking for feedback on this document over the next two weeks so please get in contact.

The meeting concluded with a discussion on Personal Independence Payments (PIP), which are replacing Disability Living Allowance (DLA) in April for those between 16-64 and not already on DLA. Those already on DLA, they will be reassessed for PIP after 2015.

You can find a lot of information on this changeover here.

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by | December 18, 2012 · 1:58 pm

Personal Independence Payments and Service Specification Consultations

Over the last week, there has been two big step towards the new-look NHS and benefits system. On the 12th of December, Service Specifications, which set out plans for nationally commissioned specialised services, have been released for consultation. This was followed by the Personal Independence Payment (PIP) regulations on the 14th of December.

The Service Specifications have been created to remove the inconsistencies in service provision across England. They also, for the first time, set out a national guide for provision; highlighting measures for improving clinical outcomes, patient experience and integration of primary, secondary and tertiary services.

The service specification which relates to Specialised Neuromuscular Services can be found from page 11 here. It is hoped that this national approach to commissioning will tie existing services together and map the provision of these services in the different regions – thereby addressing the inconsistency of provision of NMD services throughout England. This consultation is now under way  with the NHS seeking responses from families and organisations on these plans. Action Duchenne shall be responding, but please feel free to respond yourselves. If you’d like any help or information then please contact me. The consultation will close on the 25th of January, so please contact me before the 20th!

Personal Independence Payments (PIP) are replacing Disability Living Allowance (DLA) for disabled people ageing from 16-64 on the 8th April. People in receipt of DLA will not automatically qualify for PIP and all three million of them will need to be reassessed. This assessment is based on how your condition affects you, not what condition you have.

Around 500,000 current claimants of DLA will, it is estimated, have their benefits package reduced. 

All the information available on PIP can be found here. If you have any further questions, then please contact me: Andy@actionduchenne.org

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by | November 2, 2012 · 9:34 am

Scottish Cross Party Group Meeting on Self-directed support

Chairing: Jackie Bailie MSP
On Wednesday the 31st of October I attended a Cross Party Group on Muscular Dystrophy. All Hallows Eve provided an opportunity for us to address the introduction and scope of the self-directed support bill. We also looked at the current Care Advisor situation in Scotland.

Care Advisors: There is currently one full time Care Advisor in Lothian (Gillian Paton) and one with reduced hours across Glasgow and West Scotland (Wilma Stewart). It seems that despite a third Care Advisor post for the north being advertised over the Summer, there has not been any applications. Jackie Bailie has promised to write to Michael Matheson MSP to ensure that this situation is dealt with as quickly as possible.

Action Duchenne will also be highlighting this issue with the Health Minister.

Self-directed Support: The main focus of the discussion was on the Self-directed Support Bill. This bill ‘seeks to ensure adult and children (including carers and young carers) are given more choice and control over how their social care needs are met’. Local authorities would then be obliged to offer community care services to those that require them. Such ‘selfdirected support’ would take the form of either:
- Direct Payments (a lump sum being paid to a person or family – this would be reviewed yearly)
- Directing available resources (giving the patient more choice on care services)
- Local authority arranged support (with local authorities taking the arranging of support on if the patient or family opts out of either of the above)
- A mix of the above.

This, it was hoped, would be a first step towards a completely integrated system (health, social care, education, benefits and allowances) – with the person at the center.

However, 3 overarching problems were found with this proposal which must be accounted for:
1. Health and Safety – many of the people involved in these schemes are vulnerable and without the local authority or health system to monitor people’s care, this may lead to serious problems. Moreover, the responsibility of taking charge of your own care, training and employing your carers is a huge task.
2. Funding – the complex needs of those with Duchenne and Becker Muscular Dystrophy must be taking into account when funding for carers and their training is provided.
3. Availability of services – Unfortunately, for those with rare conditions, choice is not often a possibility. Services are incredibly rare, and so even if people want more e.g. Hydrotherapy or physiotherapy, it may not be available.

It was also acknowledged that this bill would only be fully understood when the bill for Health and Social Care integration is passed.

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by | July 30, 2012 · 4:17 pm

‘The Way Forward’ – Strategic Clinical Network for Neurology announced

The NHS Commissioning board announced last week that a ‘Strategic Clinical Network’ (SCN) for neurological conditions will be established across England.

You can download an overview of these networks here. You can also read the case for Strategic Network for Neurology written by the Neurological Alliance here.

These networks set out to bring together clinicians, social care workers, third sector workers and patients to define and advise commissioners on ‘best practice pathways’.

Therefore, the hope is that these formalised networks will address challenges such as service integration and delayed diagnosis.

Such networks are argued to be key in tackling the disparity between services in different areas. The terms which are reiterated in the publications are coordination, integration and innovation.

These networks have improved care for Cancer and Stroke sufferers in the past.

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by | May 2, 2012 · 10:05 am

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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Filed under disability, westminster

by | April 24, 2012 · 11:22 am

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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Filed under Action Duchenne Meetings, disability, National Advocacy Council, NHS

by | April 12, 2012 · 9:35 am

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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by | April 11, 2012 · 10:16 am

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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by | March 15, 2012 · 10:22 am

Daniel’s Fight for Wheelchair Services – An Update

By Daniel (on twitter @DanielvsNHS or check out his blog)
This is an update to a previous article I wrote for Duchenne Campaigns in October of last year.
In the previous article I detailed my fight with Gloucestershire Wheelchair Services to get a suitable powered wheelchair and the fact that I had finally handed my fight to PALS, quite a lot has happened since then, but unfortunately I still have no new wheelchair and am confined to my bedroom.
First I’ll start with some good news, between the following four charities, The lions club Cheltenham, The Act Foundation, The Joseph Patrick Trust and Equipment for Independent living, I have been promised £3500 towards a new wheelchair, this is very generous especially in todays economic climate and I am greatly appreciative.
I have also managed to find the ideal chair to meet my needs, the chair is an ex-demonstration Frontier X5, at £9000 not the cheapest chair on the market and I doubt getting a brand new one would ever be possible.  The chair has great suspension and large low pressure tires to cope with any bumps without jarring, it reclines practically flat which is essential for my particular medical needs and has a great, highly sensitive, joystick which allows for very small movements to control the chair.
Now back to Wheelchair Services, PALS managed to get them to agree to allowing me to apply for an INNF, at first we thought this would be a good option, but on further investigation it became obvious that we would be turned down should we apply as I would have to prove my needs were ‘exceptional’ which they aren’t, Wheelchair Services should be able to provide a suitable chair for people with DMD.
After hitting that brick wall I was supplied with an advocate from the Muscular Dystrophy Campaign, they have a lot of experience fighting for people in similar situations and also have access to a large law firm should the need arise.
My advocate, David, started contacting Wheelchair Services at the end of October 2011, he has had a similar experience to PALS and myself so far, Wheelchair Services take a long time to reply to any emails, getting them on the phone is nearly impossible and they tend to be extremely stubborn.
David and I quickly decided that a wheelchair voucher would be my best option, I could then top that up with charity funding to get the best chair possible, I had already been turned down for a voucher when I had asked Frances, lead OT of Gloucestershire WCS, as my medical condition may deteriorate in the next five years.  David was hopeful we could challenge this, he spent a long time playing phone tag with Frances and waiting for responses to emails, eventually he came to the conclusion that Frances would not budge or help in any way.
After talking with his colleagues he found the name of someone higher up in Gloucestershire NHS who might be able to help, Rosi Shepherd, it took him some time to get hold of her but she did seem more amenable at first, she contacted Wheelchair Services and came back with the arguments they had already given us.  We countered with a letter from an RGN who has worked with me for several years and the fact that historically there is no evidence to suggest that my needs will change within five years (I had my previous chair for fourteen years), the reply was interesting, they changed tack suggesting I may improve within five years, they want an assessment by another wheelchair service and they would not consider my nurses letter “as it contradicts with our opinion”.  Shortly after this email they said they would like to assess me for a new chair with a different seating system, I have agreed as I am still trying to cooperate with them, I have stipulated that I don’t want Frances involved and that I want to record the meeting, lets see if they are willing to be cooperative too.
I doubt the latest chair offered will be suitable, and even if it is their policy of on-pavement only use and artificially limiting a chairs speed to four miles per hour would put my safety at risk and restrict my independence.  In the end I can’t see us getting anywhere unless we get a law firm involved, this will cause things to drag on even longer, but if I win it will hopefully help others in a similar situation too, I will not give up the fight and maybe, with a lot of luck, I will be able to go outside this Summer.

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