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
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.
Founded around 3 years ago Myelopathy.org has continued to steadily grow to reach a global community of CSM sufferers, professionals and their supporters. As part of our goals to support research to help improve the lives of patients suffering with CSM, we have been allowing researchers to ask questions of our community to help them better understand the condition.
This has been tremendously successful, with our largest survey now completed by over 1000 people with CSM from around the world. This makes it one of the largest ever studies conducted in CSM and certainly the largest on patient perspectives.
The findings of the survey are yet to be fully analysed, but the researchers have recently published an article showing the key role of Myelopathy.org in reaching patients with CSM.
We are very proud to have been a part of this process and we hope you are too! This article highlights that we, the Myelopathy.org community, are not simply passengers but a force with a voice driving progress.
Your participation in these surveys is entirely voluntary but if you have the time to participate, please continue to do so. Our currently active surveys can be found here.
1. Davies et al. (2018). Lessons From Recruitment to an Internet-Based Survey for Degenerative Cervical Myelopathy JMIR Res Protoc 2018;7(2):e18
As part of Myelopathy.org's commitment to raising awareness, with our partner researchers at the University of Cambridge, have produced an education article for the BMJ (British Medical Journal), which has been published today: Easily Missed: Degenerative Cervical Myelopathy.
It highlights the condition, including the significant of delayed or misdiagnosis, the challenges in making a diagnosis, whilst offering information to help doctors make the diagnosis and manage the condition better.
The journal is estimated to be read by 120, 000 doctors each week and we hope this is a useful step in helping change care for the better.
Please feel free to like and share this article, to help promote its audience! Below is how far and wide the article has reached so far, lets push the boundaries, promote the message and help Myelopathy.org grow!
Where are we up to?
We have had a great response, so far, to this second round survey, with 166 of you taking part (although only 134 finished the survey to the end!). Whilst this is a fairly large number of people, we would love to have many more! This is because, the more people we have reporting their symptoms, the more accurate and significant our results will be. This in turn means that we will be more likely to help improve diagnosis times for patients.
Have you shared you experience of DCM? If not, we would love to hear from you! The survey can be found on the Myelopathy.org website, under the research tab, in the survey section or directly by following this link: Click here for Round 2 DCM Survey!
How can you help?
We would be really grateful if more of you could take part in our second-round survey. You don’t need to have done the first round to take part, anyone is welcome! Thankfully, the second-round survey is much quicker to complete than the first round and should take less than 10 minutes.
Reminder of the background:
This project originally had its beginnings all the way back in September 2016 with the Myelopathy Day at the University of Cambridge, where a small group of people described how DCM affected them. There were some fantastic results and insights obtained from that day, giving us a long list of symptoms and ways in which DCM can affect your life. This was eye-opening, as some of the descriptions were totally different to what the medical textbooks say! However, in order to ensure these results represented everyone with DCM, we needed to test the results in a larger group of people, to see if we had missed anything.
To achieve this, we put together a survey (the first round) that went live in January 2016. Over 300 people took part in this round! A massive thank you to you all! We again managed to get some great results, especially regarding which categories patients find most important.
Nevertheless, following this first survey, quite a few of you mentioned symptoms and effects on your lives that we hadn’t previously considered. This meant that we had to add these to our lists and then re-survey everyone, to see how common these symptoms were amongst all DCM patients, to ensure they were also fully representative.
Thank you all in advance for your help, happy surveying!
by B. Hilton
Cervical spondylotic myelopathy (CSM) is a clinical diagnosis. By this, we mean that CSM is not diagnosed on the basis of an MRI scan alone. Rather, it is the combination of clinical signs and symptoms of myelopathy with an MRI scan showing cervical spinal cord compression (CSCC). Symptoms of myelopathy include: limb weakness, numb and clumsy fingers, instability and falling over, bladder and/or bowel disturbances. CSM can then be managed with an operation to decompress the spinal cord, which will help to prevent disease progression and hopefully give some symptomatic improvement.
Therefore, symptoms + MRI scan showing CSCC= CSM = surgery*
However, it is now becoming better understood that as we age, CSCC becomes more and more common. This is often through natural wear and tear changes of the bones and joints in the neck. However, not all people with CSCC have symptoms of myelopathy. This poses a problem. What is the best management plan for those people with compression of their spinal cord but no (or very minor) symptoms of myelopathy? Witiw et al. recently decided to address this very question.
In order to figure out the best management plan for this group of people with cord compression but little or no myelopathic symptoms, Witiw’s group looked at the published medical literature dealing with patients who fell into this category. They found that overall if you have cord compression but no symptoms of myelopathy, the risk of developing myelopathy in the future is relatively low. Therefore, it is usually best not to operate in these cases. Instead, patients should be given clear advice on the symptoms of myelopathy so that they can watch out for them and should be followed-up in 6 months to 1 year to ensure no myelopathy has developed. Furthermore, these patients should avoid high-risk activities that may aggravate their necks such as “downhill skiing or snowboarding, mountain biking, or contact sports”.
The caveat to the above recommendations is that surgery may be indicated for patients with CSCC but no symptoms of myelopathy if they have one or more risk factors for developing myelopathy in the future. These risk factors are:
Witiw et al. recommend that even if a patient with one of these risk factors does not want an operation right away, it is best to follow them up more closely to monitor for myelopathy or symptom worsening, in which case an operation is the usually the best course of management.
Overall, further work is needed to confirm whether this approach towards asymptomatic people with CSCC is ideal. However, Witiw et al.’s work provides an excellent summary of current medical knowledge of how best to manage this subset of people.
*This is of course a very simplified account; an operation is not appropriate in all cases.
 Christopher D. Witiw, MD, MS, FrancoisMathieu, MD, Aria Nouri, MD, MSc, Michael G. Fehlings, MD, PhD. Clinico-Radiographic Discordance: An Evidence-Based Commentary on the Management of Degenerative Cervical Spinal Cord Compression in the Absence of Symptoms or With Only Mild Symptoms of Myelopathy. Global Spine Journal. Article first published online: December 18, 2017.
Sorry for the long delay in publishing of your latest blog; there has been a lapse since the student editor (a.k.a me a.k.a Shahzaib) has been extremely busy! We look forward to seeing you again next week with another blog, this time about the COMPARISON OF FREE AND FEE-BASED METHODS of internet surveys on CSM! Stay tuned!
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