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 on February 2018.
NOTE
Although Myelopathy Support aims to be a reliable source of information, we cannot accept any responsibility for the information provided. We also do not assume any responsibility for the use or content of any product or service
mentioned. Myelopathy.org is not responsible for any third-party content referenced, displayed or linked to or on the Myelopathy.org internet site. The inclusion of any link does not imply endorsement by Myelopathy.org of the site. Use of any such linked website is at the user’s own risk.
I have just found this site after being diagnosed over 4 years ago. To be honest I am crying writing this message, after watching the video, its the first time I have heard people describing how I feel. Will definitely be joining this group. Big thank you to all of you that have put this together.
I’m please you find us helpful. Glad to have you aboard, Dawn. We get it like no-one else can because we are living it every day.
Best Wishes
Shirley
Hiya . After returning to Birmingham 5 years ago to return to work, I developed a real problem with my right shoulder and arm (I’m also right handed) . After various tests this was deemed to be Brachial neuritis! Very painful!
After trying to contact the hospital with the help of various support workers for probably three years (ish). Eventually I was taken to a hospital in an ambulance with pains across my chest!
The staff at this hospital were unhappy with the time and lack of information I had received. I believe this had an impact and I soon started to receive information and more tests and X-rays .
It transpires that I actually have degenerative cervical myelopathy.
I am 47 years old and I really am having a tough time with this.
Surgery is looming with 2 vertibae to be removed. Thanks for listening.
Good luck with your surgery. I hope it goes well for you. For more support do feel free to check out Myelopathy.org’s Support group on Facebook – they are a global community of thousands of people living with Degenetive Cervical Myelopathy who will understand your predicament. https://www.facebook.com/groups/myelopathy.support/?ref=share
Hi Neil
I have been experiencing similar pain. Although Left shoulder and a left hander.
I am still in the ‘system awaiting a diagnosis’ I am also struggling.
Have you made any headway with pain yet
I had Surgery for Spondylotic cervical myelopathy 2 years ago.
Unfortunately due to the complications and time in Surgery, the Surgeon could not do my C7 which is now touching the Spinal cord and causing an array of problems. Neuralgia in the right side of my face. Tremor in my right arm and pain in my lumbar and lower back and right leg. I also feel like I am being stung in my feet at night. The Surgeon won’t go back inland do the C7 section as this would unbalance my head. As I have cages in C4,5 and 6. I know that I am deteriorating, and worry about this leaving me paramedic. Sorry to run on. I am so pleased to find a Group that understands this.Thankyou so much Shirley
Hello.
Carnt beleive I’ve found your groupe this describes my symptons to having had majour car crash 4 years ago resulting in vertibral destruction I was told I would heal with time but it has resulted in clumsy hands pain and balance issues I am unable to work so starting new claim for pip as I write this hoping for better medical help thank you .
[…] If anyone has any concerns or problems about benefits or work please check out our blog about benefits for those with DCM. […]