by | November 6, 2012 · 12:27 pm

Debate on Muscular Dystrophy in Northern Ireland

Yesterday there was a debate at Stormont on Muscular Dystrophy. This debate was presented by Sue Ramsey MLA. Members of the Health Committee made statements and commended the motion.

Gordon Dunne MLA, Robin Swann MLA, Mark Durkan MLA, Kieran McCarthy MLA, Paula Bradley MLA, Maeve McLaughlin MLA, Pam Lewis MLA, Roy Beggs MLA, Mickey Brady MLA, Alex Easton MLA, Steve Agnew MLA and Samuel Gardiner MLA all made statements on the motion.

If they are your MLA, please thank them for contributing to this important debate.

They highlighted the disjointed and inadequate care provided to many families living with Duchenne and Becker Muscular Dystrophy in Northern Ireland. You can watch their statements here.

This debate was sparked by the McCollum Report and the campaigning work of Action Duchenne, the All Party Group and the Muscular Dystrophy Campaign over the Summer.

Specific problems were highlighted:

The Care Advisor post, which has now been vacant for over a year, was discussed. After a bit of confusion, Edwin Poots MLA (the Public Health Minister) clarified that there has been applicants and said that they should be in post ‘this month’. Robin Swann MLA pointed out the commitment for a consultation on how the role would develop and the possibility of making it a dual mandate role with two people.

Kieran McCarthy spoke of the gaps in services and the consequential unneccessary unplanned admissions. Such emergency care costs £2.27million. Even basic services such as wheelchairs, beds and splints are often battled for.

Sue Ramsey MLA highlighted Action Duchenne’s call for an ‘all-Ireland’ Centre of Excellence for neuromuscular conditions in order to provide a one-stop, mulidisciplinary, holistic service as set out in the Standards of Care Lancet 2010 document.

Mickey Brady MLA focused on the lack of knowledge of muscular dystrophy at GP level and called for Recommendation 13 of the McCollum report to be given particular stress.

Recently a family was given diagnosis over the phone after this issue was discussed in previous meetings. It was agreed then that such behaviour should never happen again. Robin Swann MLA made this point and Alex Easton MLA promised that the Minister would look into the issue.

Edwin Poots MLA then made his statement. He announced a steering group for the development of neuromuscular services – recommendation 4. Mr Poots then agreed that recommendation 13 was vital, and that the HSC board would look into arranging group event training for GPs.

However, Mr Poots believed that the neurological conditions subgroup of the long-term-conditions service team provided leadership and that a neuromuscular lead (recommendation 1) would need to be justified.

Another concerning aspect of Mr Poots statement was the long-term succession planning called for in recommendation 14 was seen as feasible due to the training required and the difficulty in getting specialists after positions are left vacant.

Edwin Poots MLA concluded his statement by proposing to respond more fully to the McCollum Report before Christmas and stating that discussions on ‘all-Ireland’ joined up services have begun.

Action Duchenne looks forward to this response and welcomes Mr Poots’ view that services in Northern Ireland must be improved. We hope that the recommendations which Mr Poots agreed with will be put into place hastily and that the McCollum report can act as a starting point for further strides forward in providing the care that people living with Duchenne and Becker Muscular Dystrophy require.

We continue to call for investment and better organisation of services for Duchenne and Becker in Northern Ireland.

- Wheelchair services, housing adaptations and medical devices such as splints must be provided more quickly without the need to fight the system.

- We hope that the current specialists in Northern Ireland will be linked together to create a specialised multidisciplinary team at a specialist centre which can filter down expertise to local health workers, GPs, social workers and schools.

- Additional Care Advisors and a Neuromuscular Lead must be appointed.

- A long term view should be taken, with planning for the hiring or replacing of health workers and clinicians being of utmost importance. The recent Care Advisor situation should never happen again.

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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 | October 26, 2012 · 8:51 am

New Welsh Muscular Dystrophy Network sets out overview and vision

On the 23rd of October, I attended the CPG on Muscular Dystrophy on ‘Developing neuromuscular services in Wales’. On the panel were Mark Isherwood AM, Dr Andrew Goodall and Dr Gareth Llewlyn. They, alongside Care Advisors, physiotherapists and clinicians have produced a review of neuromuscular services. This review is the launch of what will be the Welsh Neuromuscular Network.

This network will plan and 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 review is ongoing and shall be updated as neuromuscular services in Wales change.

The Network hope that this set of specialised healthcare professionals will create a knowledge base from which new services and better support can be given to both patients and local services. This, in line with the reports on expensive unplanned admissions, hopes to save money by better monitoring of neuromuscular conditions.

Visions for the future of this network include development of the highly successful care advisor roles, the appointment of a specialist adult neuromuscular physiotherapist and for clinicians who are specialised in neuromuscular conditions to have it recognised in their job plans. Adult care, transition, pyscho-social care, physiotherapy and access for powered wheelchairs were also highlighted as issues to be tackled by the Network.

Sarah Harris, the Care Advisor for South West Wales, has also made a great step forward with the setting up of an adult clinic for the first time in Swansea. Action Duchenne welcomes this news and hopes that this clinic will lead to similar clinics throughout Wales.

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by | September 25, 2012 · 11:32 am

Northern Ireland Round Table event on the 23rd and the APG on 24th of September

On the 23rd of September Action Duchenne held a round table event at the Malone Lodge for an update of Action Duchenne’s activity over the summer, research funding, the McCollum report’s recommendations and the current standing of Neuromuscular services in Northern Ireland.

The main point of focus in the discussions was the Care Advisor post which has still not been filled. This post became vacant in November 2011. The post was agreed to be funded in February by the Belfast Trust, with Karin Jackson from the Belfast Trust, informing the All Party Group that the Care Advisor post would be advertised before the end of May. An appointment would then be made by the end of June or the start of July.

During the consultation process for the job description, members reiterated the importance of this vital role being split over two posts to avoid gaps in support during periods of illness/absence. Also highlighted was the large work load for one person and the division between a clinical focus and family focus in the job description; this division was made more apparent given that only nurses could apply for the role. The pay scale was also mentioned as being insufficient for the workload and expertise required. These concerns were not taken into account.

The post was advertised in May, June and July, but no applications were received. The post is now being re-advertised with no changes made to the job description. The application deadline is on the 4th October.

The concerns indicated in the consultation process were highlighted as reasons for the lack of applications during both the round table event and the APG. Robin Swann MLA raised an ‘Assembly Written Question’ on this issue and Conall McDevitt MLA promised to write to the Belfast Trust and ask them to pool applicants for this post as soon as possible.

If the job is filled, then another role would be sought. This role would be a family care coordinator role. The possibility of no applications for the post by October 4th was addressed. There were three possible outcomes acknowledged:

1. That the job description would be re-drafted to open up the role to health professionals who were not specifically nurses.

2. That the job would be advertised again.

3. That the job would be redesigned into two separate roles – one clinically based and one family care advisor. Funding would then be found and both roles would be recruited for.

The third outcome was seen as the best course of action, with a short-term stop-gap position also being proposed. Of course, no decision can be made until October 4th.

Other News:

The Belfast Trust is writing a response to each recommendation of the McCollum report. This will be given to Edwin Poots to approve in October. Running parallel to this will be the Health Committee motion which will create an Assembly Debate. The wording of the motion is being decided, but it will overlap with the Belfast Trust’s response and should also be tabled in October.

The next APG will be held in November. If you require any more information or minutes from the round table meeting please contact me at andy@actionduchenne.org.

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by | September 4, 2012 · 3:59 pm

The Re-Shuffle

Today saw the Coalitions first main reshuffle. In this reshuffle, Andrew Lansley was replaced as Health Secretary by former Culture secretary Jeremy Hunt and Paul Burstow was replaced as Care Minister by Norman Lamb.
Here is a really good article that explains the Department of Health reshuffle and what it may mean for the NHS.

There are rumours of Jeremy Hunt’s views which are not positive. However, we also recognise that he has campaigned “for a better deal for parents of severely disabled children and for carers. He also pressed for simplification of the highly complex benefit system and for the removal of all disincentives in the system that prevent or discourage disabled people from working”.

We hope that he continues to focus on the difficulties which carers and parents of severely disabled children deal with when trying to fight for services.

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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 | July 9, 2012 · 3:29 pm

Northern Ireland: Publishing of The McCollum Report

On the 3rd of July, the Muscular Dystrophy Campaign held an event at Stormont to celebrate the publishing of their McCollum Report. This report was a 6 month review of access to specialist neuromuscular care in Northern Ireland.

This report was commissioned by the MDC, after similar reports (the Walton Report England 2009, Mackie Report Scotland 2010 and the Thomas Report Wales 2010), to understand why there are inconsistent standards of care throughout the UK.

The report’s findings detailed the reduction in services after the transition from paediatric to adult, the need for long-term security to service provision, the need for more clinical time given to those with neuromuscular conditions and the need for better integration and co-ordination of services that take into account musuclar dystrophy as a complex and specialised condition.

The recommendations surround these issues with a call for appointing more Care Advisors, a Neuromuscular lead in Northern Ireland and transition workers to facilitate patients’ transition from paediatric to adult services. The report also calls for a structural reorganisation of service provision, advocating a ‘hub and spoke’ model of service provision, with adult services having an increased ‘network’ comparable to the paediatric network. This approach will run parrallel to a neuromuscular registry for both paediatric and adult services.

Action Duchenne’s supporters and families were involved in the consultation for this report and welcome much of what it says. Nick Catlin’s response can be found here.

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by | June 27, 2012 · 4:30 pm

APPG for Muscular Dystrophy AGM

Tuesday 26th June 2012, Committee Room 20. Chair: Dave Anderson

Yesterday saw the presentation of the audit on unplanned emergency admissions to hospital for people with neuromuscular conditions. This audit was led by Professor Mike Hanna, Sean Overett and Dr Marilena Korkodilos.

The audit featured twelve hospitals and 395 patients with a neuromuscular disease. Out of 576 admissions, the audit found that 216 were preventable. The audit also highlighted that £9million was spent on unplanned admissions between 2009-2010.

The findings laid out measures that could’ve been taken to prevent these admissions:

  • Better surveillance of condition – only 16% of patients were known by a Neuromuscular team! This means that 84% of patients were not properly monitored.
  • Emergency plans – there was a need for a plan to be put in place if any issues arose.
  • Education – better education of patients, families and GPs would lead to a greater ability to recognise the early symptoms of serious problems, catching them early.

The floor was then opened for questions. The large panel of commissioners were asked questions about the Health and Social Care bill, and how that would effect the implementation of these recommendations, how ‘joined up care’ was going to work in practice and what the implementation time scale was.

With its ‘patient centred’ approach and national commissioning, the commissioners stated that this would actually help the implementation of monitoring patients and the development of ‘outreach’ services.

Such ‘outreach’ services seemed to defy the recommendation to integrate care services more and increase the monitoring of the condition and no time scale was mentioned. However, the depth of information that this audit provides and the areas it highlights is a step in the right direction.

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by | May 29, 2012 · 3:12 pm

Boys to Men Campaign and Lobbies

Our Boys to Men campaign has been launched. This campaign focuses on the need for best practice medical care and genetic treatment for all. It has four main asks:
•    9 Centres of Excellence for Duchenne. These centres are required to deliver the full range of services needed to properly manage the condition, as set out in the internationally agreed Standards of Care for Duchenne (published in the Lancet Dec 2009/Jan 2010).
•    £5 million in 5 years of research funding. This money will help the ‘skipDuchenne’ project and other research programmes to ensure the development of the first-ever genetic treatments that could benefit every case of Duchenne.
•    Access to specialist educational assessments and interventions, careers advice and support for independent living. Young men living with Duchenne need person-centred planning and personal budgets to live a self-defined life.
•    A simplified means of clinical trials for genetic medicines. It currently takes far too long for treatments, which have a great deal of trial-evidence backing them, to get to the market. This must happen more quickly.

For more information, please visit our Campaigns page. Here you can find the Boys to Men Campaign document and all the information about the upcoming lobbies. The lobbies provide you with an opportunity to speak to your MP about getting better standards of care, more research and better medicine for those with Duchenne Muscular Dystrophy. You can also write to your MP in order to set up a meeting at the lobby or to raise the attention of your MP to Duchenne Muscular Dystrophy.

Please feel free to get in contact with me at andy@actionduchenne.org or call me at 0208 556 9955.

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by | May 8, 2012 · 12:56 pm

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 17th 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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