Neuromuscular Care (North-West)

George Hollingbery Excerpts

Wednesday 9th February 2011 Westminster Hall

[Graham Evans]

Okay. I thank the hon. Gentleman.

[George Hollingbery (Meon Valley) (Con)]

I apologise to my hon. Friend for intervening immediately after another intervention. He has just raised an interesting point about the transition from paediatric services to adult services. In my own area of the south-central region, which is clearly outside the geographical area that is the focus of this debate, we have recently managed to secure at least an advertisement for a new care adviser in the area. However, I understand that that care adviser will not be able to advise on paediatric conditions but only on transition and adult services. Is it not the case that we need a full range of services for all sufferers of this disease and a proper range of advice across all ages?

[Graham Evans]

My hon. Friend makes a very good point and I totally agree. A holistic approach is needed and there should be a seamless transition from being a young person and receiving paediatric services to receiving adult services. However, this point does not just apply to muscular dystrophy. For example, lots of mental health care services suffer from similar problems. Nevertheless, my hon. Friend is quite right. There should be a seamless transition from one service to another.

Greater support at transition from paediatric to adult services is necessary to provide evidence of services being removed or greatly reduced when patients leave paediatric services, even though, as I have said, their needs may well increase given the progressive nature of many of these neuromuscular conditions. There is a three-monthly transitional clinic in Manchester and a monthly transitional clinic that alternates between Alder Hey children’s hospital and the Walton centre, which are both in Liverpool. Both those services—in Manchester and Liverpool—are extremely vulnerable and entirely dependent on the availability of their respective consultants. A transitional clinic at Preston is evolving, but it is not formally funded and is based on the good will of the clinicians. The transitional clinic at Alder Hey children’s hospital is the only one that is attended by the required multidisciplinary team. None of the transitional services in the region is funded or appropriately staffed.

The Walton report, published in August 2009, expressed the concerns that the all-party group on muscular dystrophy developed as a result of its inquiry into access to specialist neuromuscular care. Martyn Blenkharn, chair of the Muscular Dystrophy Campaign’s North West Muscle Group, expressed in written evidence to the all-party group his frustrations about attempts to access NHS physiotherapy:

“No hydrotherapy available in the area - private arrangements can be made, but no assistance from NHS physiotherapists can be obtained. Compared with the previous PCT area (North Cumbria) which covered the area where I used to live, the service in my current PCT area (North Lancashire) is totally unsatisfactory - the quality of care from those who treat me directly is fantastic, but their hands are tied to provide what is really needed.”

The all-party group concluded in its regional summary about the NHS North West region:

“We heard from clinicians in the North West region about the problems facing the multi-disciplinary North West Neuromuscular Network - founded and chaired by Dr Stefan Spinty, Consultant Paediatric Neurologist and lead neuromuscular clinician at Alder Hey Children’s Hospital, Liverpool. Dr Spinty is currently managing this vital network single-handedly without any funding. We believe that the Network should at least be supported by a Network Coordinator. Greater support at transition from paediatric to adult services is also needed, given the evidence of services being removed or greatly reduced when people leave paediatric services. Existing transition services are extremely vulnerable and we were concerned to learn from clinicians that none of the transitional services in the region are funded nor appropriately staffed. Having met with commissioners from the North West Specialised Commissioning Group to discuss these concerns, local clinicians and representatives from the Muscular Dystrophy Campaign were disappointed to be told that there are competing priorities in the region, and that PCT budgets were under strain. We urge the North West SCG and the local PCTs to undertake a service review to address the weaknesses highlighted by clinicians, patients and the Muscular Dystrophy Campaign.”

The NHS North West specialised commissioning group has taken significant steps forward since those findings, and I will outline them shortly.

The North West Muscle Group raises awareness of neuromuscular conditions and provides a forum for people living with the condition to share experiences and advice about access to local and regional services. Since its launch in June 2009, the group has been actively campaigning to improve access to neuromuscular services in the region, engaging with MPs and with the NHS North West specialised commissioning group. Pressure from the North West Muscle Group, alongside the Muscular Dystrophy Campaign and the all-party group, was instrumental in ensuring that the NHS North West specialised commissioning group conducted a thorough review of neuromuscular services.

Joanne Ashton, a member of the North West Muscle Group, commented:

“I’m glad I joined the Muscle Group. It means I’ve got all this information early on and I won’t come up against a brick wall later - I feel I’ve been pre-armed. It’s nice to know I’m not on my own and it’s good to meet other people at different stages. Every day I imagine how bad things could get, but at the Muscle Group I met young lads with Duchenne muscular dystrophy who are in wheelchairs and they’re fantastic, they’re doing so well. Everything had a real positive spin on it too, and I realised that it’s not all doom and gloom.”

The campaign in the north-west was further spurred on by a comment made by Mike Farrar, NHS North West’s chief executive, to Lord Walton of Detchant at an event in Parliament in November 2009. Having referred to the review of neuromuscular services in the south-west, which Sir Ian Carruthers, NHS South West’s chief executive pushed through, Mike Farrar commented:

“Anything Sir Ian Carruthers can do, we can do better”.

As a result of lobbying by the Muscular Dystrophy Campaign, a review of services was set up in the NHS South West specialised commissioning group in February 2008. In February 2009, local primary care trusts approved a new £1 million neuromuscular strategy to reduce the £6.9 million spent in the region on unplanned emergency admissions to hospital for people with neuromuscular conditions.

I am fully aware, as are several hon. Friends, of the excellent work by the NeuroMuscular Centre in Winsford, Cheshire, which is in the constituency of my hon. Friend the Member for Eddisbury (Mr O'Brien). That centre provides ongoing specialist physiotherapy, which reduces the number of falls among people with neuromuscular conditions, and it also offers social enterprise opportunities. However, although the physiotherapy provision is regarded as excellent by those who go to the centre, difficulties are encountered with PCTs and funding, as reported in the Muscular Dystrophy Campaign’s patient survey 2010. Mr A from Cheshire has Charcot-Marie-Tooth disease and travels to the centre for specialist physiotherapy and hydrotherapy, but his local PCT is unwilling to pay, despite not offering him any alternative physiotherapy or hydrotherapy provision. Following concerted pressure by the Muscular Dystrophy Campaign, the North West Muscle Group and the all-party group, Jon Develing, chief officer of the NHS North West specialised commissioning team, made a personal commitment to the all-party group in January to recommend that the NHS North West specialised commissioning group undertake a review of neuromuscular services.

The review was set up by the commissioning group in May 2010, and the steering group set up an effective model for the NHS working with the Muscular Dystrophy Campaign, patients and expert clinicians from the region. To further involve people living with neuromuscular conditions, a stakeholder day was held in September 2010, which represented a vital opportunity for people to have their say about the services that are crucial for an acceptable standard of specialist neuromuscular care in the region. That led to a gap analysis and a report with recommendations for service improvements— the first time ever that neuromuscular services have been looked at in this way, across the whole region.

The recommendations are currently being put to local primary care trusts to approve new investment for a neuromuscular strategy. The proposed minimal required investment to reduce the £13.6 million spent on unplanned emergency admissions to hospital for neuromuscular conditions and to sustain neuromuscular services across the north-west includes 2.5 new fully NHS-funded care advisers, 2.5 specialist consultants, two to three specialist physiotherapists and one specialist neuromuscular nurse.

Will the Minister agree to write to the specialised commissioning group and to PCTs, endorsing the recommendations as necessary steps to save money and reduce unplanned emergency admissions? Will he ensure that a named individual in the NHS in the north-west will take the work forward once the specialised commissioning groups disappear? The neuromuscular network approach is hugely important to ensure the co-ordination of neuromuscular services in specialist multidisciplinary teams, as demonstrated in the south-west of England and by the Scottish Muscle Network, and to ensure links to the primary and secondary care that plays a crucial part in the management of neuromuscular conditions.

Dr Stefan Spinty, consultant paediatric neurologist at Alder Hey children’s hospital, who played a leading role in the north-west neuromuscular service review, said:

“In order to improve patient outcomes and help to reduce unnecessary and costly hospital admissions, it is important that the recommendations from the North West Specialised Commissioning Group report, which is due to be published soon, are implemented. All neuromuscular clinicians who have been involved in the North West neuromuscular service review are committed to support the implementation process to further improve and secure service provision for individuals affected by neuromuscular conditions in the future.”

Christine Ogden, a campaigner and fundraiser from Bolton, whose grandson has Duchenne muscular dystrophy, said:

“It is vital, that essential increase in care, support and advice for families outlined in the North West Specialised Commissioning Group’s report recommendations, which will make a real difference for families living with muscle disease. It is also so important that information for health professionals about neuromuscular conditions is significantly developed.”

Beryl Swords from Liverpool, whose son John has FSH muscular dystrophy, has commented on the provision of physiotherapy for adults with neuromuscular conditions:

“I feel strongly that physiotherapy for adults with muscular dystrophy is totally inadequate. If improvements were made to North West neuromuscular services, then perhaps this area of care could be more freely available, keeping people with the condition mobile for longer.”

The urgency of improving neuromuscular services in the north-west is encapsulated in the following comments by Nicci Geraghty, a north-west campaigner and fundraiser:

“I have two nephews with Duchenne muscular dystrophy. This is not only a cruel condition for my nephews to suffer from, but also very harrowing at times for us as a family to watch each stage of progression knowing that the postcode lottery already exists throughout the country. This has a huge impact on survival rates and I don’t wish to see my nephews robbed of any chance they have to lead the best quality of life possible.”

The evidence provided makes a compelling case for the urgent necessity of developing and improving neuromuscular services in the north-west in order to save money. Will the Minister write to NICE stressing the importance of a NICE quality standard for Duchenne muscular dystrophy, as well as one on home ventilation and respiratory support? Will he attend the next meeting of the all-party group on muscular dystrophy on Wednesday 9 March to update the group on progress, and will he agree to meet clinicians who have been developing a neuromuscular curriculum with the Association of British Neurologists? Thank you for calling me, Mr Davies.