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Prevalence Data

North East Public Health Observatory

In 2009, a health needs assessment for Long Term Neurological Conditions was carried out by the North East Public Health Observatory (NEPHO) on behalf of the North East Commissioning Neuroscience Network - NENN

The purpose of the assessment was to provide an overview of the demand for neurological services across the network. In doing so, NEPHO also described the data that is currently available plus the problems and limitations associated with them. Readily acknowledging such data is only a starting point, work will continue to up-grade the quality of data to provide a robust database for Commissioning procedures in the future.

Estimates of incidence and prevalence, by Primary Care Trusts and PCT clusters, were collated for the following long term neurological conditions:

  • Ataxia
  • Central nervous system infections
  • Cerebral Palsy
  • Charcot Marie Tooth Disease
  • Dystonia
  • Epilepsy
  • Essential Tremor
  • Huntington's Disease
  • Migraine
  • Motor Neuron Disease
  • Multiple Sclerosis
  • Muscular Dystrophy
  • Parkinson's Disease
  • Post-polio Syndrome
  • Spina Bifida and Hydrocephalus
  • Spinal cord injury
  • Traumatic brain injury

The full NEPHO report is attached:

Nepho_Health_Needs_Assessment_for_LTNC_NEoE.pdf

The report provides a wealth of information and data throughout but for more information on prevalence data for the above long term conditions in relation to North East England, refer to Appendix A

Multiple Sclerosis

The NEPHO report describes a local approach to data collection about one specific condition, Multiple Sclerosis - see pages 17-18

New research funded by the MS Society, published in 2009, shows that there are likely to be around 100,000 people diagnosed with MS in the UK, a prevalence of 164 per 100,000 of the population rather than the 144 per 100,000 cited in the NEPHO report

Researchers at the London School of Hygiene and Tropical Medicine used data from the General Practice Research Database (GPRD) to calculate a revised estimate of the number of people with MS in the UK. The GPRD is the world's largest database of anonymised patient data from primary care, and contains patient records from 6% of GP practices in the UK. It is commonly used by academics around the world to study diseases, including studies of the prevalence of particular conditions

On a local level, in Gateshead, in a 2007 Northumbria University report, also funded by the MS Society, the Primary Care Trust is quoted as estimating that 364 people in Gateshead had MS, as of September 2006. That would suggest a prevalence of 191 people per 100,000 of the population of Gateshead diagnosed with MS

Although the data collected may not be statistically valid, information collected in 2006 for North Northumberland & North Cumbria suggests that the prevalence of MS in our region is significantly greater than the national average, ranging to over 300 per 100,000 of the population. Prevalence increases the further north one goes in the country

Of course, the number of people affected by MS is far greater than the number of people diagnosed with the condition. Such a figure would include family, friends & carers. When estimating the number of people affected by MS, the MS Society normally increases the number diagnosed with MS by a factor of four

More information about the Gateshead study is to be found in the attached report:

Gateshead_MS_Project_Final_Report_021107.pdf

Epilepsy

The North East Neurosciences Network has tasked the Durham Neuro Forum to undertake the first ever mapping of Epilepsy Services in the North East.

An Epilepsy Advisory Group was formed in February 2010 by Commissioner, Gillian Smith, with TVDNY Regional Coordinator, Jo Cole involved.

A questionnaire has been forwarded to all Primary Care and Acute Trusts in the region to quantify local service delivery and the data will contribute to the review of neurological services within the scope of NHS North East.

Commissioned to lead the mapping process, Gavin Barlow (Epilepsy Action - Retd) has released data suggesting 19,578 people in the North East region with epilepsy.

Analysis and review of the questionnaires will take place in March / April 2010.

Other Neurological Conditions

Additional data and information on the incidence and prevalence of other Long Term Neurological Conditions would be welcomed

This should be submitted to one of the following, as appropriate:

info@nenn.org.uk (for North East England as a whole)

enquiries@na-na.org.uk (for Tyne and Wear, Northumberland and North Cumbria)

info@na-na.org.uk (for Tees Valley, Durham and North Yorkshire)

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