Calendar An icon of a desk calendar. Cancel An icon of a circle with a diagonal line across. Caret An icon of a block arrow pointing to the right. Email An icon of a paper envelope. Facebook An icon of the Facebook "f" mark. Google An icon of the Google "G" mark. Linked In An icon of the Linked In "in" mark. Logout An icon representing logout. Profile An icon that resembles human head and shoulders. Telephone An icon of a traditional telephone receiver. Tick An icon of a tick mark. Is Public An icon of a human eye and eyelashes. Is Not Public An icon of a human eye and eyelashes with a diagonal line through it. Pause Icon A two-lined pause icon for stopping interactions. Quote Mark A opening quote mark. Quote Mark A closing quote mark. Arrow An icon of an arrow. Folder An icon of a paper folder. Breaking An icon of an exclamation mark on a circular background. Camera An icon of a digital camera. Caret An icon of a caret arrow. Clock An icon of a clock face. Close An icon of the an X shape. Close Icon An icon used to represent where to interact to collapse or dismiss a component Comment An icon of a speech bubble. Comments An icon of a speech bubble, denoting user comments. Comments An icon of a speech bubble, denoting user comments. Ellipsis An icon of 3 horizontal dots. Envelope An icon of a paper envelope. Facebook An icon of a facebook f logo. Camera An icon of a digital camera. Home An icon of a house. Instagram An icon of the Instagram logo. LinkedIn An icon of the LinkedIn logo. Magnifying Glass An icon of a magnifying glass. Search Icon A magnifying glass icon that is used to represent the function of searching. Menu An icon of 3 horizontal lines. Hamburger Menu Icon An icon used to represent a collapsed menu. Next An icon of an arrow pointing to the right. Notice An explanation mark centred inside a circle. Previous An icon of an arrow pointing to the left. Rating An icon of a star. Tag An icon of a tag. Twitter An icon of the Twitter logo. Video Camera An icon of a video camera shape. Speech Bubble Icon A icon displaying a speech bubble WhatsApp An icon of the WhatsApp logo. Information An icon of an information logo. Plus A mathematical 'plus' symbol. Duration An icon indicating Time. Success Tick An icon of a green tick. Success Tick Timeout An icon of a greyed out success tick. Loading Spinner An icon of a loading spinner. Facebook Messenger An icon of the facebook messenger app logo. Facebook An icon of a facebook f logo. Facebook Messenger An icon of the Twitter app logo. LinkedIn An icon of the LinkedIn logo. WhatsApp Messenger An icon of the Whatsapp messenger app logo. Email An icon of an mail envelope. Copy link A decentered black square over a white square.

Inverness MS sufferer forced to arrange life-changing treatment in Mexico after NHS tells her she ‘doesn’t meet the criteria’

Jade Taylor, from Culloden, with children Kaiden, 10, and Jiah, seven. Picture: Michael Traill.
Jade Taylor, from Culloden, with children Kaiden, 10, and Jiah, seven. Picture: Michael Traill.

A mother is having to “beg” strangers to help pay for potentially life-changing treatment in Mexico so she can continue to look after her two young children – despite it being approved for use on Scotland’s NHS three years ago.

Jade Taylor was diagnosed with primary progressive multiple sclerosis last February.

Since then she has gone from being a busy working mother, who spent several nights a week at the gym and enjoyed 17-mile bike rides, to relying on her children, Kaiden, 10 and Jiah, seven, to help care for her.

The type of MS she has is so aggressive the 38-year-old beautician now struggles with daily tasks, is in constant pain and relies on a walking aid to get about.

Her only hope of halting the progression is ground-breaking stem cell therapy, which was approved for use by Holyrood in 2019. It was agreed the NHS in Scotland would fund patients’ treatment in England, where it has been available for free for several years.

But despite having a 75% chance of responding well to treatment, she has been told she does not meet the criteria. Only certain patients with the relapsing-remitting form of the disease are eligible.

Miss Taylor cannot walk very far without a walking aid such as a relater due to her MS. Picture supplied by Jade Taylor.

‘They’ve made it impossible’

Miss Taylor, from Culloden, near Inverness, said: “It’s not right. They’ve made it impossible for anyone to meet the criteria because MS affects everyone differently and is so unpredictable.

“In Mexico they have been offering this for 10 years and it’s available to anyone no matter if they have primary progressive, secondary or relapsing MS.

“Yes, this costs a lot of money, but is it not worth it for me to have a life with my children?”

Her current treatment drug Ocrevus, which she feels is having no effect, costs the NHS £19,000 a year, with infusions needed every six months and carries a risk of cancer and brain disease.

“It’s crazy,” Miss Taylor, who has set up the Highland MS Warriors group on Facebook, said. “By having HSCT [stem cell therapy] it could halt my MS for up to 10 years. Is that not going to save the NHS money?

“I’ve got a 75% chance of doing well yet I know there are some DMTs (disease modifying therapies) being offered (on the NHS) that have as low as a 35-40% benefit.”

She is scheduled to have the haematopoietic stem cell transplantation (HSCT) at the Clinica Ruiz in Mexico’s Puebla City on April 3.

Provided she can raise the money, her immune system will be wiped out with four rounds of intense chemotherapy, before it is “rebooted” using stem cells taken from her own blood. Afterwards, she will spend eight weeks in isolation.

She has already set aside her savings and in July, launched a GoFundMe page to raise the £56,000 required to cover the cost of the procedure, medication, scans and after-care.

So far more than £15,000 has been raised. Her son also swung into action at the weekend, taking part in the Highland Bridge Swing at Garry Bridge, near Pitlochry.

Ms Taylor with her two children, Kaiden,(10) and Giah (7). Picture supplied by Jade Taylor

‘I have to take this into my own hands’

Miss Taylor said: “I’m having to beg people for money and I feel bad because they don’t even have it themselves. I’m finding it very hard.  But this is what I’m having to do, I’m having to take it into my own hands.

“When I got my diagnosis I felt the NHS basically told me ‘you’ve got MS’ and left me to it.

“Now I’m hardly walking at all, I have to crawl up the stairs in the house and my children are basically my carers. When they go to their dad’s, I’m lost without them. I need to try this so I can have a life for me and my children.

“I’m not expecting to regain full mobility, but it has the potential to give me part of my life back; not to be in constant pain or be so tired all the time.”

Despite her rapid deterioration, she has also been denied the daily living component to her Personal Independence Payment, leaving her with no one to help her with daily chores.

She said: “The Scottish Government needs to get to grips with what’s going on.

“I’ve paid my taxes and National insurance. Even after having my children I went back to work after a couple of weeks. It’s so wrong.”

In Scotland every week at least 13 people are thought to be diagnosed with some form of MS, with the incidence higher than any other country.

Orkney alone is reported to have some 80 people living with the disease. That equates to 402 per 100,000 – more than 10 times the world average of 35.9.

A Scottish Government spokesman said: “HSCT can be considered for patients with highly active relapsing-remitting MS which has not responded to licensed treatment, as recommended by the Scottish Health Technology Group.

“Expertise in the use of HSCT to treat MS in Scotland is still developing. Although delayed by the need to focus resources on Covid-19, NHS National Services Division and the clinical neurology and stem cell transplant teams in Scotland are working together on planning the development of an HSCT pathway for eligible MS patients in Scotland.”

Conversation