In this blog we cover the financial burden that a chronic condition such as myelopathy can bring. This week we speak to Shirley Widdop, an ex-Nurse that had to give up employment after being diagnosed with Cervical Myelopathy in 2012. Shirley is a very active member and an admin for myelopathy.org Facebook support group Myelopathy Support and has assisted a number of members that have found themselves in the same situation and helped them through the tangled web of the UK benefits system.
Shirley explains that living with DCM is life altering in many ways. A major concern for people that have been diagnosed with myelopathy or any similar chronic condition, is that not only do you have to deal with the challenges of living with chronic illness & disability, but you also have to look at the financial implications that it also brings.
When diagnosed, I was working part-time as a Home Help. However, it became physically impossible due to pain, fatigue & deterioration in symptoms.
I received Statutory Sick Pay, but, eventually, was obliged to apply for Employment Support Allowance (ESA). I was placed in the Work Related Activity Group (WRAG) after surgery, even though I was still recovering & the DCM had not resolved.
I was unaware I was entitled to anything else until informed by a concerned employment advisor about eligibility for the ESA Support Group and also Disability Living Allowance (DLA) (now known as Personal Independence Payment – PIP).
Both applications were denied by the Department of Work & Pensions, but, thankfully, I won on appeal. Being awarded DLA enabled access to other financial support of which I was also unaware.
Consequently, sharing such information is my passion. Dealing with DCM is difficult enough without worrying about finances. And because of this we are now putting together a benefit information section that can be found under the support section at myelopathy.org
But we need your help. Despite being a very cosmopolitan group, benefit information for our international members is sadly lacking. Please help us to rectify this so all our members have access to the financial support they need. Thank you.
Disability Benefits / Advice UK
Attendance Allowance – a disability allowance for those with long term illness &/or disability aged 65 year or over www.gov.uk/attendance-allowance/overview
Benefits & Work – advice for claiming what you may be entitled to www.benefitsandwork.co.uk
Cold Weather Payment – for people in receipt of eligible benefits who receive a payment if the average temperature in their area is recorded as, or forecast to be, zero degrees Celsius or below for 7 consecutive days www.gov.uk/cold-weather-payment/overview
Carer’s Allowance financial help for those helping to care for you at least 35 hours per week www.gov.uk/carers-allowance/overview
Citizens Advice Bureaux – advice about how to claim and assistance available to claim, specific to which part of the UK you live in www.citizensadvice.org.uk
Disabled Facilities Grant – a grant to help you convert your home if in need of adaptations www.gov.uk/disabled-facilities-grants/overview
Disability Rights UK – loads of factsheets and advice to download & peruse at you leisure www.disabilityrightsuk.org
Disabled Students’ Allowance – advice for those who need help whilst studying www.gov.uk/disabled-students-allowances-dsas/overview
Employment Support Allowance (ESA) - financial support if you are unable to work due to long term ill-health &/or disability www.gov.uk/employment-support-allowance/overview
HOLD – Home Ownership for People with Long-term Disabilities – help and advice for those who wish to purchase their own home www.ownyourhome.gov.uk/scheme/hold/
Medical Exemption Certificates – access to free prescriptions for those with long term health conditions, primarily: permanent fistulae; hypoadrenalism (for example, Addison’s Disease);diabetes insipidus and other forms of hypopituitarism; diabetes mellitus, except where treatment is by diet alone; hypoparathyroidism; myasthenia gravis; myxoedema (that is, hypothyroidism which needs thyroid hormone replacement);epilepsy which needs continuous anticonvulsive therapy; a continuing physical disability which means you cannot go out without the help of another person; or cancer and are undergoing treatment for: cancer; the effects of cancer or the effects of cancer treatment. Apply for a certificate via your GP or Consultant – ask for a FP92A form. More information available at www.nhsbsa.nhs.uk/1126.aspx
Personal Independence Payment – financial support for the extra costs that having a long term illness &/or disability whether working or not, for those aged 16 – 64 years www.gov.uk/pip/overview
Prescription Prepayment Certificate – helps to spread the cost of prescription charges for those needing multiple items but not eligible for free prescriptions apps.nhsbsa.nhs.uk/ppcwebsales/patient.do
Turn 2 Us – national charity helping people to check their benefit entitlements & source other financial help & grants they may be eligible for www.turn2us.org.uk
Warm Home Discount Scheme – a yearly scheme that can help save £140 off the cost of your electricity bill if eligible from participating suppliers www.gov.uk/the-warm-home-discountscheme/what-youll-get
Watersure Scheme – help for eligible people to pay their water bills, namely those on benefits, those who need to use a lot of water either for medical reasons or because their household has a certain number of school-age children. You also need to be on a water meter or be waiting to have one installed. Apply directly via your regional supplier. More information at www.citizensadvice.org.uk/consumer/water/water-supply/problems-with-paying-yourwater-bill/watersure-scheme-help-with-paying-water-bills/
Watersure Wales – as above for customers of Welsh Water but you don’t have to be on a meter. More information at www.citizensadvice.org.uk/consumer/water/water-supply/problemswith-paying-your-water-bill/watersure-scheme-help-with-paying-water-bills/
Winter Fuel Payment – a yearly scheme for eligible individuals to receive between £100 and £300 tax-free to help pay for heating bills if they were born on or before 5 May 1953 (this date changes each year) www.gov.uk/winter-fuel-payment/overview
Information kindly collated and presented by Shirley Widdop
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