ADULT HEALTH AND WELLBEING LONG-TERM NEUROLOGICAL CONDITIONS

ADULT HEALTH AND WELLBEING LONG-TERM NEUROLOGICAL CONDITIONS i. Summary The National Service Framework for long-term neurological conditions categorises neurological conditions as: Sudden-onset conditions such as traumatic brain injury (TBI) or spinal cord injury Intermittent and unpredictable conditions such as epilepsy, headache, early multiple sclerosis (MS) Progressive conditions such as motor neurone disease, Parkinson s disease (PD), later-stage multiple sclerosis (MS) Stable neurological conditions, which may change due to development or aging, such as post-polio syndrome or cerebral palsy (CP) in adults. Approximately 10 million people across the UK have a neurological condition. The NSF for long-term neurological conditions identifies that: Eight million people in the UK suffer from migraine Neurological conditions account for 20% of acute hospital admissions Neurological conditions are the third most common reason for GP consultations 350,000 people across the UK need help with daily living because of a neurological condition 850,000 people care for someone with a neurological condition. ii. Key Issues and gaps The high levels of deprivation among the population of Salford are associated with a relatively high level of unemployment, a high proportion of people of working age being economically inactive and relatively low levels of educational attainment. Chapter 5: Adult Health and Wellbeing 88

iii. Recommendations for commissioning Commission high-quality services for people with neurological conditions Work with the North West Specialist Commissioning Team to commission highquality services for people requiring neurosurgery and spinal surgery Develop a strategy for the management of neurological conditions Raise awareness of neurological conditions amongst GPs to improve care and standardise access to secondary and tertiary care services. Chapter 5: Adult Health and Wellbeing 89

1. Who is at risk and why Neurological conditions result from disease of or injury to the nervous system and there are numerous conditions which fall within this category. A study by the Association of British Neurologists in 1993 identified that 75% of referrals to neurologists were for 16 common neurological conditions. However, the other 25% of referrals were for conditions which were less common and often required more time for diagnosis, treatment and long-term support. Examples of less common neurological conditions are brain tumour, Huntington s disease, motor neurone disease, and genetic conditions. (See Appendix 1 Incidence and prevalence of long-term neurological conditions and Appendix 2 Salford expenditure for Antiepileptics, drugs used in Parkinsonism-related disorders and Antimigraine drugs.) 2. Level of need in the population Incidence and prevalence of some neurological conditions in the UK: Incidence and prevalence of long-term neurological conditions UK incidence per 100,000 Estimate for Salford UK prevalence per 100,000 Estimate for Salford CP 144 318 Epilepsy 80 177 500 1,105 Essential tremor 850 1,878 Migraine 400 884 15,000 33,135 MS 4 9 144 318 PD 17 38 200 442 TBI 175 387 1,200 2,651 Estimated population for Salford: Mid-2009 projected population(ons) 220,900 Out-patient activity First attendance 2005/6 2006/7 2007/8 2008/9 Neurosurgery actual 237 294 457 697 Neurosurgery expected 222 241 277 214 Neurology actual 1,607 2,423 1,911 2,222 Neurology expected 1,411 1,541 1,673 1,445 Chapter 5: Adult Health and Wellbeing 90

Admissions elective 2005/6 2006/7 2007/8 2008/9 Neurosurgery actual 127 147 193 241 Neurosurgery expected 127 135 126 111 Neurology actual 160 194 155 198 Neurology expected 180 179 169 178 Admissions emergency 2005/6 2006/7 2007/8 2008/9 Neurosurgery actual 110 141 145 166 Neurosurgery expected 67 71 64 65 (Source: NHS Compara tors: nww.nhs comparat ors.nhs.u k) Neurology actual 64 54 74 68 Neurology expected 63 65 56 51 For the populatio n of Salford, it would be expected that 37,000 people are living with a neurological condition, 4,500 will have significant disability and 13,200 will require help with activities of daily living (based on estimated figures given in Neuro Numbers Neurological Alliance April 2003). With many neurological conditions, there is no direct link between risk factors and incidence, although lifestyle factors do play a part: for example, high levels of alcohol may lead to an increased incidence of head injury. QOF is available only for people with epilepsy. The QOF data for Q4 2008/9 identified 1,800 people registered with epilepsy in Salford. Although incomplete, QOF data for Q2 2009/10 identified 1,246 people registered with epilepsy in Salford. Both sets of figures would, therefore, indicate a higher than expected prevalence of epilepsy within the population of Salford. Mortality Chapter 5: Adult Health and Wellbeing 91

With some neurological conditions, life expectancy is significantly reduced, e.g. the average time from diagnosis to death for a person with motor neurone disease is 14 months. For others, e.g. MS, life expectancy may not be reduced at all. 3. Data and information Data Sources: 2008/09 QOF data for epilepsy NHS Comparators 4. Information from regulators The Department of Health Intensive Support Team has recently met with Salford Royal NHS Foundation Trust (SRFT), the North West Specialist Commissioning Team and the Neurosciences Commissioner from NHS Salford to discuss breaches in the 18-week target for neurosurgery (non-admitted). An action plan has been put in place to address this problem. 5. Current service provision in relation to need People with neurological conditions require a broad range of services: selfmanagement, primary care, secondary care and tertiary care. Intervention may be required from neurology, neurosurgery, neuro-rehabilitation, neuropsychology, neuroradiology and neurophysiology. The NSF for long-term neurological conditions identifies in Quality Requirement 2 the need for early recognition, prompt diagnosis and treatment. Many neurological conditions e.g. headaches, migraine, restless leg syndrome can be diagnosed and managed in primary care. For other conditions, guidelines indicate that diagnosis should be made by a specialist within secondary care services. Some treatment modalities, e.g. disease-modifying therapies used in multiple sclerosis are delivered via tertiary care services. Chapter 5: Adult Health and Wellbeing 92

Other pathways into services are unplanned: a patient experiencing a traumatic brain injury will be admitted through the Accident and Emergency Department (A&E) and may require surgery to remove a blood clot. Neurological conditions require different diagnostic tests: for example, assessing the severity of a brain haemorrhage would be achieved using scanning equipment whereas assessing peripheral nerve damage is carried out using nerve conduction tests. Depending on the severity of the problems, patients may require rehabilitation delivered by multi-disciplinary teams; patients with challenging behaviours and people with altered moods may require neuropsychology services. In Salford, patients presenting to their GPs with a variety of neurological conditions may appropriately receive diagnosis and treatment within primary care e.g. patients with headaches where a secondary care appointment is felt to be necessary, patients can choose between a traditional referral to a secondary care consultant or may use the Neurological Integrated Clinical Assessment and Treatment Service (NICATS). With this model the referral is made via Choose & Book for triage where the referral information is reviewed by a neurologist who can opt to: Transfer the patient back to primary care Refer to the Tier 2 Epilepsy or Headache Service Request a scan Transfer patient into secondary care neurology neurosurgery services. If the patient is scanned as the first option, the scan is reviewed by a multi-disciplinary team with the following options: Transfer the patient back to primary care with supporting evidence from the scan results Refer to the Tier 2 Epilepsy or Headache Service Transfer patient into secondary care neurology/neurosurgery services. Patients presenting to A&E with an urgent neurological condition, e.g. sub-arachnoid haemorrhage or TBI, may be admitted and transferred to neurosurgery on-site at Hope Hospital as this is the Greater Manchester Neurosciences Centre. Chapter 5: Adult Health and Wellbeing 93

Following surgery, or where a patient has been admitted with an acute neurological condition, the patient may require neuro-rehabilitation to facilitate discharge from hospital. In this case the patient will be transferred to the Acute Neuro-rehabilitation Unit at Hope Hospital until medically stable. If further in-patient rehabilitation is required, the patient is transferred to the Intermediate Neuro-rehabilitation Unit at Trafford General Hospital. On discharge from hospital, and for those patients who are not admitted to hospital but require neuro-rehabilitation, there is the Salford Community Neuro-rehabilitation Team. Referrals can be made to this team by any health or social care professional and by patients and carers for those people who have previously been known to the team and do not require diagnosis. Discharge from hospital is dependent on access to appropriate care packages being established and appropriate placements and housing being available for those people who cannot return to living in their previous accommodation. The Salford Community Neuro-rehabilitation Team is able to provide some support for people to return to work particularly where the patient is re-accessing their previous post. The Brain and Spinal Injury Charity (BASIC) also offers a vocational service, which is particularly useful for patients who are unable to return to their previous work. Many people can be supported to self-manage their neurological conditions but for others the wide variety of problems associated with these conditions makes this difficult to do. 6. Programme budgeting and resources Out-patient cost First attendance 2005 /6 2006/7 2007/8 2008/9 Neurosurgery actual 73,149 88,862 134,918 213,411 Neurosurgery expected 68,253 75,125 85,880 65,796 Chapter 5: Adult Health and Wellbeing 94

Neurology actual 316,336 413,643 331,698 444,924 Neurology expected 271,145 247,110 274,341 262,200 Admissions cost elective 2005 /6 2006/7 2007/8 2008/9 Neurosurgery actual 434,893 513,179 721,940 601,807 Neurosurgery expected 387,082 413,226 412,647 328,043 Neurology actual 160,379 204,456 150,277 192,953 Neurology expected 204,396 199,426 185,706 183,871 Admissions emergency 2005 /6 2006/7 2007/8 2008/9 Neurosurgery actual 641,419 552,759 511,667 641,419 Neurosurgery expected 320,693 320,776 298,526 320,693 Neurology actual 161,535 186,333 271,809 335,264 Neurology expected 178,499 183,116 160,807 142,982 (Source: NHS Comparators: nww.nhscomparators.nhs.uk) 7. Relevant research and evidence base Department of Health (2005) National Service Framework for Long-term Conditions. London: Department of Health. Available: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/docum ents/digitalasset/dh_4105369.pdf (Accessed 17 February 2010) National Collaborating Centre for Chronic Conditions (2006) Parkinson s disease: national clinical guideline for diagnosis and management in primary and secondary care. London: Royal College of Physicians NICE (2003) Multiple Sclerosis - Management of multiple sclerosis in primary and secondary care. NICE, London. Available: http://www.mssociety.org.uk/downloads/nice_a4_guideline_8.d9b540d5.pdf (Accessed 17 February 2010) Chapter 5: Adult Health and Wellbeing 95

Royal College of Physicians & British Society of Rehabilitation Medicine (2003) Rehabilitation following acquired brain injury: national clinical guidelines (Turner- Stokes L, ed). London: RCP, BSRM. Available: http://www.rcplondon.ac.uk/pubs/contents/43986815-4109-4d28-8ce5- ad647dbdbd38.pdf (Accessed 17 February 2010) Royal College of Physicians, British Society of Rehabilitation Medicine, Multidisciplinary Association of Spinal Cord Injury Professionals, British Association of Spinal Cord Injury Specialists, Spinal Injuries Association (2008) Chronic spinal cord injury: management of patients in acute hospital settings: national guidelines. Concise Guidance to Good Practice series, No 9. London: RCP. Available: http://www.rcplondon.ac.uk/pubs/contents/7d8a4192-1f2d-43a8-8e27-f515a6a7b991.pdf (Accessed 17 February 2010) 8. Community engagement Representatives from the Greater Manchester Neurological Alliance sit on the Salford Neurological Conditions Commissioning Group. An invitation for patients/carers to join the group has gone out through the Salford Citizens Panel newsletter. As part of the Greater Manchester review of neuro-rehabilitation services, questionnaires will be sent out to patients who have received in-patient and community neuro-rehabilitation. 9. Unmet needs and service gaps There are difficulties in terms of access to in-patient neuro-rehabilitation, which is currently provided at the Intermediate Neuro-rehabilitation Unit based on Ward 1 at Trafford Healthcare NHS Trust. This is being addressed as part of a Greater Manchester review of neuro-rehabilitation services by the Greater Manchester Neurosciences Network. There is a recognised variation in referral rates for neurology services from Salford GPs, with referrals into the NICATS varying between 0.4 26.5 per 1,000 population. The possible reasons for variation are being evaluated as part of an audit of referral letters by SRFT. In addition, an application has been made for funding through SHINE to enable remedial action to be taken dependent on the results. Chapter 5: Adult Health and Wellbeing 96

10. Recommendations for commissioning Commission high-quality services for people with neurological conditions Work with the North West Specialist Team to commission high-quality services for people requiring neurosurgery and spinal surgery Develop a strategy for the management of neurological conditions Raise awareness of neurological conditions amongst GPs to improve care and standardise access to secondary and tertiary care services. 11. Recommendations for further needs assessment A Health Needs Assessment was to be commissioned on behalf of the PCTs across Greater Manchester through CBS. However, the Department of Health is working on a tool to provide information similar to that provided in the North East Network Health Needs Assessment via NHS Comparators. This should be available from April 2010. Chapter 5: Adult Health and Wellbeing 97

Appendix 1 Incidence and prevalence of long term neurological conditions Estimates for the populaiton of Salford based on national rates Estimated population of Salford Mid-2009 projected population (ONS) 220,900 Condition UK incidence per 100,000 Estimated number in Salford UK prevalence per 100,000 Estimated number in Salford QOF Register Q4 2008/09 QOF Register Q2 2009/10 Cerebral palsy 144 318 Epilepsy 80 177 500 1,105 1,800 1,246 Essential tremor 850 1,878 Migraine 400 884 15,000 33,135 Multiple sclerosis 4 9 144 318 Parkinson's disease 17 38 200 442 Traumatic brain injury 175 387 1,200 2,651 Estimates available in Health needs assessment for long term neurological conditions in North East England Downloaded from http://www.nepho.org.uk/publications.php5?rid=690 Appendix 2 Antiepileptics Drugs Used In Park'ism/Related Disorders Antimigraine drugs Quarter Items Actual Cost s 1st Quarter 2nd Quarter 3rd Quarter 4th Quarter 1st Quarter 2009/2010 2nd Quarter 2009/2010 23,572 396,182 1st Quarter 23,399 399,443 2nd Quarter 24,173 352,758 3rd Quarter 23,692 340,247 4th Quarter 24,315 351,769 1st Quarter 2009/2010 25,483 372,868 2nd Quarter 2009/2010 Quarter Items Actual Cost s 5,025 100,432 1st Quarter 5,091 109,893 2nd Quarter 5,282 112,023 3rd Quarter 5,022 110,537 4th Quarter 4,941 107,253 1st Quarter 2009/2010 5,409 116,457 2nd Quarter 2009/2010 Quarter Items Actual Cost s 3,648 62,925 3,688 63,343 3,637 62,810 3,420 55,895 3,523 56,858 3,711 58,429 Chapter 5: Adult Health and Wellbeing 98

Information for the data warehouse 2008/09 QOF data for epilepsy, http://www.dhsspsni.gov.uk/lcg_qof_data_2008_09 References Association of British Neurologists (1993) Guidelines for the care of patients with common Neurological Disorders in the United Kingdom. Not available online Department of Health (2005) National Service Framework for Long-term Conditions. London: Department of Health. Available: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/document s/digitalasset/dh_4105369.pdf (Accessed 17 February 2010) Neurological Alliance, (2003) Neuro Numbers: A brief review of the numbers of people in the UK with a neurological condition. Available: http://www.neural.org.uk/store/assets/files/20/original/neuronumbers.pdf (Accessed 17 February 2010) Chapter 5: Adult Health and Wellbeing 99