Pre-Budget Submission 2017 - MS Ireland

Pre-Budget Submission 2017 MS Ireland supports the Pre-Budget Submissions of the following organizations, of which MS Ireland is a member:   

The Neurological Alliance of Ireland (NAI) Care Alliance Ireland The Disability Federation of Ireland (DFI)

Below MS Ireland presents summaries of the key issues in each of the submissions that have relevance to people affected by MS in Ireland, and we support the submissions with further evidence and recommendations of our own.

The Neurological Alliance of Ireland (NAI) The two main asks in NAI’s Pre-Budget Submission for 2017 with relevance to people affected by MS are: 1. Investment of €3 million in neurology services in 2017, to address critical staffing shortages in neurology services nationwide following a national audit carried out by the NAI and the National Clinical Programme in Neurology. MS Ireland is aware of serious deficiencies in the current provision of neurological services. Ireland has the lowest number of neurologists per head in Europe, and our recent report ‘The Societal Costs of Multiple Sclerosis in Ireland 2015’ showed that nearly one-third of people with MS had not seen a neurologist in the previous year (MS Ireland, 2015, p.46). Regular monitoring is essential to ensure that people with MS are receiving optimal treatments to manage symptoms and slow disease progression. A recent survey of neurology clinics by NAI found critical deficits in staffing across all neurology centres and unacceptable waiting times for MRI scanning. Key findings include:  

No centre has MRI access for routine referrals in under two months and seven of the eleven neurology centres cannot get access within one year of referral. The ratio recommended by the British Association of Neurologists is for one consultant neurologist per 70,000 population. This ratio is exceeded within every hospital group in Ireland and in one hospital group (Mid West) the ratio is 1:200,000 (NAI, 2016).

MS Ireland is aware from people affected by MS who contact our Regional Community Workers and Information Line that many people have to wait considerable lengths of time to see a neurologist and some also have to travel huge distances– for example, a person with MS in Donegal could have to travel to Dublin. Recent research now strongly suggests that long-term outcomes for people with MS are improved by early identification, early treatment with disease modifying therapies (DMTs) and 1

regular monitoring (Dobson et al, 2014, Goodin et al, 2012a; Goodin et al, 2012b; Cohen et al, 2012; Butzkueven et al, 2014; Cocco et al, 2014; among others). Moreover, MS Ireland’s ‘Societal Costs of Multiple Sclerosis in Ireland 2015’ report found that public funds can be saved by slowing disease progression and preventing relapses. The report estimates that MS relapses cost Irish society €16.9 million annually. Annual societal costs increase steeply with disease progression and increases in disability severity, from €34,942 per person per year for those with mild disabilities to €100,554 per person per year for those with severe disabilities (MS Ireland, 2015). In order to provide early identification, early treatment and regular monitoring of disease activity in people with MS so as to reduce relapses and delay or prevent disability progression, considerable investment is required to address critical staffing and resource deficits in neurology services, as recommended by NAI. 2. Investment of €4 million in neuro-rehabilitation services in 2017, to develop inpatient and community neuro-rehabilitation services in two Community Health Organisation (CHO) areas as an important initial step towards multi-annual investment in neuro-rehabilitation services to meet the commitment outlined in the Programme for Government. Neurorehabilitation consists of a range of community and hospital-based treatments and supports such as physiotherapy, occupational therapy, speech and language therapy and psychological and cognitive assessments and interventions. It ranges from intensive treatment in acute hospital settings to long-term community-based rehabilitation. The function of neurorehabilitation is to both prevent unnecessary deterioration in a person’s condition and functioning, and to help compensate for any function that has been lost as a result of a neurological condition. The 2011-2015 National Neurorehabilitation Strategy clearly laid out the need for neurorehabilitation services in Ireland and a plan for delivering them. However, since the publication of the strategy, no tangible progress has been made to deliver on this. Two particular studies demonstrating the cost-effectiveness of neurorehabilitation for multiple sclerosis are referenced in the National Neurorehabilitation Strategy document – Ward et al. (2009) evaluated a community-based multidisciplinary rehabilitation team and found that savings made from reduced hospital admissions and outpatient visits rendered the team costneutral. Pozzilli et al. (2002) found that home-based care was considerably more cost-effective than hospital –based care. MS Ireland supports NAI’s campaign for the development of neurorehabilitation services and call for an investment of €4 million in 2017 to develop inpatient and community neurorehabilitation services in two Community Health Organisation (CHO) areas, as the start of a multi-annual commitment to continue investing in these services and developing them nationwide.

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You can read NAI’s full Pre-Budget Submission here: http://www.nai.ie/go/news/3-7-2016-nai-pre-budget-submission-2016

Care Alliance Ireland The three main areas covered in Care Alliance Ireland’s Pre-Budget Submission for 2017 with relevance to people affected by MS are: 1. Direct income supports and allied benefits The report ‘Societal Costs of Multiple Sclerosis in Ireland 2015’ found that 63% of the sample reported receiving on average 12 hours of informal care per week; informal care being defined as unpaid care provided by family and friends. The report notes that this care is frequently provided at the expense of paid work on the part of the caregiver, resulting in annual productivity losses of €77.8 million (MS Ireland, 2015, p. 49-50). Reducing working hours or stopping work altogether can also have considerable negative financial implications for the caregiver and their family unit. Care Alliance Ireland cite several studies that demonstrate that family carers are at an increased risk of experiencing financial hardship (OECD, 2011; Carers UK, 2007; O’Shea, 2000; NAI, 2014). Care Alliance Ireland’s Pre-Budget Submission therefore calls for the government to:   

Administer the Carer’s Support Grant (formerly the Respite Care Grant) on a pro-rata basis annually as opposed to a once-off payment, Continued recognition of half-rate Carer’s Allowance as a core payment, Reintroduction of the Telephone Allowance.

Care Alliance Ireland also calls for increased funding for the Housing Adaptation Grant scheme, which allows people with a disability to make modifications to their homes. This scheme has seen a reduction of 56% since 2010. Furthermore it is noted that the income of adult children living in the house is now taken into account in the means test for this payment and this is felt to be unfairly restrictive and should be revised. MS Ireland supports this recommendation. 2. Home Care Packages MS Ireland is aware of serious inequities in the availability of Home Care Packages. Because this scheme is not established in law, there is currently no standardised assessment tool for determining eligibility for the scheme and what supports will be made available. Furthermore, the scheme is designed primarily for older people (over age 65) and the current guidance states that “if a younger person’s assessed needs can be best met by services designed for older people then occasionally such an application may be considered”.

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HSE Disability Services provide funding for people under the age of 65 with a disability to receive supports in the community through personal assistant services, home care packages and access to home help; however this too is severely under-resourced and the service is generally restricted to providing essential personal care such as washing, taking a shower, assistance with changing position, oral hygiene, or help at mealtime. Personal Assistance services, which are designed to provide broader supports with independent living including domestic tasks, shopping and getting out and about, have been considerably reduced in both availability and scope since the start of the financial crisis (Disability Federation of Ireland, 2014). This lack of clarity and uncertainty surrounding if and how people with disabilities can access vital care services and supports with independent living results in many people with MS being denied access to such services, which if available could prevent the need for admission to a nursing home. MS Ireland is also aware of many instances of people with MS being unable to be discharged from acute hospital settings due to the lack of availability of appropriate home care and personal assistance supports. Care Alliance Ireland call for an investment of €31 million in home care services in 2017, equating to an additional 1.55m home care hours over and above current published targets. MS Ireland welcomes and fully supports this call; however these figures are based on numbers of people aged 65+. Care Alliance Ireland also notes the need for adequate funding to be provided for Home Care Packages to those under 65. Due to the lack of clarity and inconsistency in the way these services are provided to people under 65 as noted above and as further stated in Care Alliance Ireland’s Pre-Budget Submission, MS Ireland calls for the government to commit to surveying the support needs of people under the age of 65 with disabilities and long term illnesses such as MS, so that the provision of adequate Home Care Packages for this group can be properly costed. Care Alliance Ireland’s Pre-Budget Submission also notes the disproportionate weighting of funding in favour of nursing home care as opposed to community-based supports that could enable an individual to continue to live in their own home. Currently the Nursing Home Support Scheme (Fair Deal) affords a statutory right to residential care. Care Alliance Ireland and Family Carers Ireland are calling for the establishment of an equivalent to the Fair Deal scheme which guarantees access to age and need appropriate community-based care and for the publication of a plan with timescales for this. MS Ireland supports this call. Examples of supports that people with MS might access through such a scheme could include home care, personal assistants, aids and appliances including person-centred assistive technologies such as telecare and telehealth, environmental controls and mobile communication, and home adaptations. 3. Service improvements Care Alliance Ireland call for Budget 2017 to increase funding for the provision of flexible respite care options, so that respite care is available to everyone who needs it, regardless of age and location. In-home respite care, whereby respite care services are provided in the person’s own home while their carer goes away for a break, is one example of such a flexible model. 4

Many Care Alliance Ireland member organisations are also aware of serious difficulties in accessing healthcare and support services. In addition to the deficits in neurology services as described by the Neurological Alliance of Ireland, MS Ireland’s own studies also note serious deficiencies and gaps in the provision of community-based healthcare and therapeutic supports, such as physiotherapy and occupational therapy. For example, only 40.4% and 15.7% of people with MS have seen physiotherapists and occupational therapists respectively in the last year (MS Ireland, 2015). You can read Care Alliance Ireland’s full Pre-Budget Submission here: http://www.carealliance.ie/publications_submissions

The Disability Federation of Ireland (DFI) DFI’s submission to the Department of Social Protection makes 14 recommendations in total. Below these recommendations are summarized in two main groupings according to their relevance to people affected by MS: 1. Income and poverty Recommendations one to six call on the government to introduce better tools for measuring poverty amongst the disabled population and implementation of government guidelines for carrying out Poverty Impact Assessments. They argue that current tools for assessing poverty levels and the impact of poverty do not account for the additional costs of living with a disability. Also, minimum income levels need to reflect the cost of disability. DFI note that the economic costs of living with a disability are about 35% of income (€207) per week (Cullinan & Lyons, 2015). As a minimum interim measure, DFI calls on the government to introduce an increase of €20 to Disability Allowance and protect supplementary benefits such as the Household Benefits Package, Domiciliary Care Allowance and Free Travel Scheme. Living with MS can accrue many additional costs including travel to appointments, time off work, extra household bills, over-the-counter medications, aids and appliances, household adaptations and costs associated with exercise such as gym membership. In a recent submission to the Clinical Advisory Group for Discretionary Medical Cards, MS Ireland estimated the average additional costs of living with MS to be at least €2,005.70 per year. These figures are average costs and 50% of people with MS will experience higher costs than those reported. Also, the unpredictable nature of MS can mean that people with MS will often be faced with sudden and unpredictable financial burdens when they experience relapses, whereby some or all of the costs outlined above would increase sharply. Studies have found that even a mild relapse can have a significant financial impact on the individual, with more severe relapses being associated with steeper costs (O’Connell et al, 2014).

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MS Ireland therefore welcomes and supports DFI’s recommendations to the Department of Social Protection regarding income and poverty. 2. Disability and work Recommendations seven to fourteen relate to disability and work, including:     

Ending discriminatory practices of exclusion of those not on the live register from employment activation schemes, Introducing tax credits for those in work to account for the cost of disability, Introducing protocols for greater flexibility and timeliness for those who move in and out of employment due to their episodic conditions (such as MS), A replacement for Partial Capacity Benefit that is responsive to individual circumstance and need in consultation with all stakeholders, Replacement of the Workplace Equipment Adaptation Grant with a person centred scheme that allows people to access the technology they need in order to progress through to work and sustain that work using assistive technologies and other equipment that supports them to be active members of society. DFI also note that the existing eligibility criteria for Medical Cards can act as a barrier to employment for people with long-term health conditions such as MS as people fear the card and associated services being withdrawn once their income exceeds the minimum threshold. For many, the medical costs that they would then be liable for upon withdrawal of a Medical Card would outweigh the income they would get from working. Therefore, eligibility for a medical card should be based on need and not income for those with longterm illnesses and disabilities. MS Ireland supports these recommendations, in particular the recognition of episodic and unpredictable conditions such as MS which are not adequately accounted for in current provisions for employment retention and income support. MS Ireland’s recent report ‘Multiple Sclerosis and Employment: Facts and Figures’ made the following policy recommendations in relation to employment, which would also have relevance for other long-term illnesses and acquired disabilities:

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Development of specialised early intervention guidelines to support those absent from work to return to work as soon as possible when and where appropriate. These guidelines should specifically account for the needs and experiences of those living with long-term chronic illnesses and how the symptoms of illnesses such as MS impact on work. These guidelines should be developed by the National Disability Authority in consultation with people affected by the condition and organisations and professionals who support them. Access to appropriate and timely workplace assessment services from specialists who have a detailed understanding of particular illnesses and conditions. These specialists may be occupational therapists or organisational psychologists who have recieved training in particular disability or illness areas, or professionals from relevant support organisations 6

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who have received training in undertaking assessments. Assessments should be conducted in consultation with the multi-disciplinary team of healthcare professionals who are working with the employee. The Employer Disability Information Service should have a role in supporting employers to identify and access specialist assessment services. Access on-going in-work supports for both employers and employees. Existing ‘job coach’ services should be expanded to support job retention for those returning to a position after the diagnosis of a chronic illness or aquisition of a disability. Existing financial supports for employers, such as the Retention Grant and the Workplace Equipment Adaptation Grant, should be expanded in scope so as to cover additonal in-work supports such as fares to work if the employee can’t use public transport or drive, or employment of a support worker or job coach to provide support in the workplace, as per the Access to Work model in the UK. Appropriate post-employment planning, including access to retraining services and vocational rehabilitation services where necessary. Existing services that provide advice and guidance on employment and education should be expanded and upskilled so as to be able to provide guidance that specifically accounts for the needs and experiences of those living with long-term chronic illnesses such as MS. Avoid a ‘welfare trap.’ Extension of entitlement to Medical Cards and other associated benefits on return to work, to avoid a ‘welfare trap.

You can read the Disability Federation’s full Pre-Budget Submission here: http://www.disability-federation.ie/index.php?uniqueID=11149

This document has been prepared by Harriet Doig, Information, Advocacy & Research Officer, MS Ireland. Questions and comments can be directed to [email protected].

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Further reading ‘Societal Costs of Multiple Sclerosis in Ireland 2015’ report: http://ms-society.ie/uploads/File/Living%20with%20MS/Our%20publications/MS%20Ireland%20%20Societal%20Cost%20of%20MS%20in%20Ireland%202015cc.pdf MS Ireland’s 2015 Advocacy Statement: http://mssociety.ie/uploads/File/Community/MS%20Ireland%20Advocacy%20Statement%2021012016.pdf MS Ireland’s submission to the Clinical Advisory Group for discretionary Medical Cards: http://mssociety.ie/uploads/File/Community/Submissions/Submission%20to%20the%20Clinical%20MS%20Ire land%20Advisory%20Group%20for%20Discretionary%20Medical%20Cards-%202016.pdf ‘Multiple Sclerosis and Employment: Facts and Figures’ report: http://mssociety.ie/uploads/File/What%20We%20Do/Corporate%20Publications/2016/Multiple%20Sclerosis %20and%20Employment%20-%20Facts%20and%20Figures.pdf

References Buchanan, L. (2014). Access to Life: Personal Assistant Services in Ireland and Independent Living by People with Physical and Sensory Disabilities. Disability Federation of Ireland. Butzkueven H, et al. (2014). Efficacy and safety of natalizumab in multiple sclerosis: interim observational programme results J NeurolNeurosurg Psychiatry; 85: 1190-1197. http://jnnp.bmj.com/content/85/11/1190.long Carers UK. (2007). Real Change Not Short Change. Carers UK. Cocco et al. (2014). Influence of treatments in multiple sclerosis disability: A cohort study. Mult Scler. pii: 1352458514546788 http://www.ncbi.nlm.nih.gov/pubmed/25257611 Cohen JA, et al. (2012) .Alemtuzumab versus interferon beta 1a as first-line treatment for patients with relapsing-remitting multiple sclerosis: a randomised controlled phase 3 trial. Lancet. 380(9856): 1819-28. http://www.ncbi.nlm.nih.gov/pubmed/23122652 Cullinan, J., & Lyons, S. (2015). The private costs of adult disability. In J. Cullinan, S. Lyons, & B. Nolan, The economics of disability: Insights from Irish research.

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Dobson et al. (2014). Assessing treatment response to interferon- : is there a role for MRI? Neurology. 82: 248-54. Goodin DS, et al (2012). Relationship between early clinical characteristics and long term disability outcomes: 16 year cohort study (follow-up) of the pivotal interferon ß-1b trial in multiple sclerosis. Journal of Neurology, Neurosurgery and Psychiatry; 83(3): 282-287. http://www.ncbi.nlm.nih.gov/pubmed/22193561 Goodin DS, et al. (2012). Cause of death in MS: long-term follow-up of a randomised cohort, 21 years after the start of the pivotal IFN -1b study. BMJ Open. 2(6). pii: e001972 http://www.ncbi.nlm.nih.gov/pubmed/23204140 Multiple Sclerosis Society of Ireland (2015). Societal costs of multiple sclerosis in Ireland 2015. Dublin: MS Ireland, UCD and Novartis. Neurological Alliance of Ireland. (2014). Living with a Neurological condition in Ireland: Report on the findings of a National Survey 2014. Neurological Alliance Of Ireland. Retrieved from http://www.nai.ie/assets/8/ADEF89E9-0845-E6A8C4A6FE69B3E2958C_document/NAI_Survey_A4__1_.pdf Neurological Alliance of Ireland (2016). Report on National Survey of Neurology Services 2015. Dublin: NAI. O'Connell K et al. (2014). Economic costs associated with an MS relapse. Multiple Sclerosis Rel Disord [published online 16 September 2014] OECD. (2011). The Impact of Caring on Family Carers. In Help Wanted? Providing and Paying for Long-Term Care. OECD. O’Shea, E. (2000). The Costs of Caring for People with Dementia and Related Cognitive Impairments. National Council on Ageing and Older People. Pozzilli et al. (2002). Home-based management in multiple sclerosis: Results of a randomized controlled trial. Journal of Neurology, Neurosurgery and Psychiatry, Vol. 73, No 3, pp. 250-55. Ward, A., Barnes, M., Stark, S. and Ryan, S. (2009). Oxford Handbook of Clinical Rehabilitation (2nd edition). Oxford: Oxford Medical Publications.

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