Progressive Supranuclear Palsy and Corticobasal Degeneration are not common diseases. But for half an hour on 23rd January 2013, they were the centre of attention in the Central Committee Room of the House of Commons, where Andrea Leadsom (MP for South Northamptonshire) introduced a debate raising the issues that PSP and CBD sufferers, their carers and the PSP Assocation (www.pspassocation.org) wanted to hear about. In response, Norman Lamb (Minister of State for Care and Support) told the debating chamber that simply raising the issue forced himself and officials in the department to think about PSP and CBD, and include it in their future planning.

This was the first parliamentary debate I’ve been to, and it was fascinating to see the machinery of democracy close to. Squeezing in to 3 rows with 35 assorted carers, ex-carers, relatives, professionals and PSP Association members, we far outnumbered the 5 MPs present. However, that did not dampen the excitement among those of us who had turned up, that ‘our disease’ was being put on the political map.

Andrea Landsom’s speech was well crafted (I happen to know she had more than a little help from the PSP Association!), and covered an impressively wide range of topics. Starting out with prevalence and impact of the disease, she talked about the work of the PSP Association, in particular recognising Brigadier Michael Koe and Sebastian Coe’s efforts to raise awareness and money. She moved on to discuss the needs of people with PSP and their carers in the context of a changing and uncertain future for health and social services. She finished with 4 points for Norman Lamb to respond to:

  • the involvement of PSP sufferers and their carers in shaping services
  • support for individuals with the disease and their carers, in particular access to palliative care services
  • education of health and social care professionals to better recognise PSP/CBD and make a diagnosis
  • support for further research in to PSP/CBD

Both Andrea Landsom and Normal Lamb gave a positive spin on future changes the health and social care, often referring to ‘integrated care’. However, those I spoke to afterwards were much more pessimistic, finding it difficult to see how multiple providers, particularly from the private sector, could provide more integrated services. Working out how nationally commissioned services for rare diseases such as PSP would work with locally commissioned Clinical Commissioning Groups was glossed over with many details missing. The picture may be clearer when the Rare Diseases Strategy is published, promised by the end of the year. Normal Lamb urged patients and their carers to get involved with local and national Health Watch organisations, designed to feed back information to Clinical Commissioning Groups, so I hope many people will take up that challenge.

Putting PSP in the context of larger initiatives for neurological disorders was carried through most of Normal Lamb’s response: “No one should be left behind because of the rarity of their condition”. He discussed the palliative care strategy for neurological diseases, and his engagement with the Neurological Alliance of whom the PSP association are members. In this vein, I thought he answered the point on education well, highlighting the need for professionals to have a strategy for recognising the patient with a rare disease, even if they don’t know what it is. Again, the Rare Diseases Strategy will have more specifics on this.

This theme of PSP as one of many rare diseases was carried through to the research issue, where Lamb pointed to the National Institute for Health Research and the Medical Research Council (both of whom I have benefited from, I am currently an MRC Clinical Training Fellow), but maintaining that research proposals need to be competitive. It is a pity he did not specifically recognise the seed funding that charities like the PSP Association provide for pilot projects as the basis for larger NIHR or MRC grants. He suggested the NIHR/MRC money is not ring-fenced, although it is true that they do target particular systems and the neurosciences have done relatively well in retaining funding quotas in recent years.

Lamb summed up by expressing a wish to keep in contact with Andrea Landsom about how best to meet the needs of people with PSP and CBD.

My impressions? The time was short and I was impressed how many aspects of PSP and CBD both politicians covered in the time available. I was not reassured that the new health and social care bill will improve the lot for people with PSP, the tension between providing a national standard of care with more local decision making seems contradictory. Many details and specifics were missing, and in fairness could not be covered in the time given. However, the issue has been raised; Norman Lamb and his officials will have to consider it. And I hope they do.

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