EDS Pathway Scotland

04/02/2026

Did NHS Highland jump the gun on stopping injections and interventions for new Chronic Pain patients?” That is the question Highlands and Islands Labour MSP Rhoda Grant is asking following another meeting with the Minister for Public Health, Jenni Minto (22/01/2026).

Since 2022 new patients to NHS Highland’s Chronic Pain service have not been offered injections or intervention to help with their pain and are instead being encouraged to adopt a therapy based management of pain and “live well with pain”.

During a previous meeting with the Minister and NHS Highland in June last year, the Minister advised that she appreciates the need for both intervention and therapy in dealing with chronic pain. Mrs Grant subsequently contacted NHS Highland who have confirmed that they took the decision to stop offering these interventions to new patients in 2021/22. They state “Given the accumulating evidence that these procedures do not help patients reduce their pain in the long term, improve function or reduce medication, and the impending national review, it was agreed to no longer offer these to new patients. However, ethically, the team felt that it wasn’t appropriate to remove access to anaesthetic interventions for the existing patients who derived benefit from them.”

That national review is only being carried out now, some four years after NHS Highland made the decision to stop offering interventions to new patients. They acknowledge that existing patients benefit from these interventions so it surely stands to reason that new patients with similar conditions would benefit too had they been offered them.

I know from constituents the hope they place on being referred to the Chronic Pain team as they’ve been through the primary care services with no resolution. To have that hope dashed at the first meeting is devastating for people whose entire lives are being blighted by living with pain.

NHS Highland’s new approach to support people to “live well with pain” is of little help to the people who are living with the pain and feeling its effects, not just physically but mentally too.

The Minister asked me why NHS Highland is not allaying the fears of existing patients of the service who now fear their injections will be stopped too. I can only ask that question too and I will continue to do that in a bid to offer new and existing pain patients the treatment they need to get them out of pain, and back to living fulfilling live.

04/02/2026

And they are given out like candy by the NHS…. Any ideas??

04/02/2026

Your concerned are you…. The Scottish Parliament My kid has suffered because of the neglect and failing from nhs Lothian, how are you going to give him back his childhood?? Or school experience??

TOO LITTLE TOO LATE NO ACTION 👎

03/02/2026

Helloooo, Please spread the word to anyone that may want to be involved in EDS PATHWAY SCOTLAND

Our main immediate focus is to show the government that EDS care in not at an acceptable standard in Scotland and it must be assessed and enforced now!

Employ doctors who are specialists in EDS
Stop blockading NHS services
Immediately pave pathways for care. ( this should of been done years ago)

I have an extensive case against the nhs, several are in legal process and several and in NHS, ICO, SPSO etc…. I will share more on my story soon although some of which I can not talk about until said cases are “resolved” I do plan to work on a series explaining how to get the most from this crappy system we have been forced into… more on this soon

Scottish parliament meeting is the 17th of February I hope to plan a further meeting after this where o may be able to start adding cases to this complaint and hopefully bring as much attention to the failing that NHS Scotland has had on people with ehlers danlos syndrome and associated co-morbidities.

ENOUGH IS ENOUGH

Time for action!

03/02/2026

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30/01/2026

It will be tomorrow fellow zebras, sorry, I’m beat! And I can’t edit videos to save myself 🙄 😂

30/01/2026

Urggggggggg

Ever have one of days where you can’t even be bothered to swallow that amount of supplement??

I’m having one today, can not be bothered 🥱

But I will…. Or I’ll fall apart 😂

30/01/2026

New video up tonight about organisation and I have some awesome updates to tell you all 💜

30/01/2026

An artistic STEAM Project comparing Ehlers Danlos collagen tissue to normal tissue
'Comparing Ehlers-Danlos Syndrome Tissue to Normal Tissue' Posted by Mary Ballard
"My STEAM project explores Classical Ehlers-Danlos syndrome, which is a disease that affects connective tissue in the body (Mayo Clinic, 2022). This topic mainly relates to the, “Compare and contrast the function and structural characteristics of tissues,” objective. My art project models what the connective tissue of a health person and the connective tissue of a person with Ehlers-Danlos syndrome looks like, and lets the viewer compare the two. In explaining how Ehlers-Danlos syndrome affects connective tissue, I am also comparing and contrasting the function and structural characteristics of tissues.
Ehlers-Danlos syndrome (EDS) is a group of conditions that are genetically inherited. This project focuses on the classical type specifically. The syndrome causes connective tissue to be very weak, which causes a variety of health issues. For instance, people with EDS have very stretchy and fragile skin that has a difficult time healing (MedlinePlus, 2022). This is due to the weakness of the connective tissue. Another problem that comes along with EDS is hypermobility and, as a consequence, increased risk of dislocation of joints. This is because connective tissue is usually what holds bones at joints in place (along with ligaments), but if the tissue is not strong enough to hold the bones, then it becomes far easier for those bones to slip out of their proper spots (Mayo Clinic, 2022).
The reason that people with EDS have very weak connective tissue is because of variations in their genes. The COL5A1, COL5A2, or COL1A1 genes are ones usually seen with variants when discussing classical EDS, but other genes may also play a part (Gensemer, 2021). These genes are involved in instructing the body on how to make different types of collagen, so when the genes do not have the correct instructions, the body does not make collagen in the way that it is supposed to (MedlinePlus, 2022). Collagen is a very important part of connective tissue, as it provides a lot of support, structure, and rigidity. Normal collagen is also resistant to stretching, which, of course, is contradictory to the main symptoms of EDS (Wu et al., 2023). This shows us that it makes sense that a lack of normal collagen would make connective tissue significantly weaker, which would cause the previously mentioned symptoms of stretchy and fragile skin, along with hyper-mobile joints.
In my models of connective tissues, I attempted to show how normal collagen is packed tightly together, which is in contrast to the more stretched out collagen in EDS connective tissue. I also think it is interesting that the collagen in EDS connective tissue seems to go in more of a single direction instead of the irregular directions of the collagen in normal connective tissue. The EDS tissue is also lighter and almost looks softer than the regular connective tissue. I believe that the connective tissue shown in the reference image I used is loose connective tissue based on the large amount of ground substance and, of course, collagen in the tissue.
In summary, Ehlers-Danlos syndrome is an interesting but unfortunate disease. It has some significant effects on collagen in the body’s connective tissue, which in turn causes serious problems for those who have the syndrome. I enjoyed creating my STEAM project, and I’m glad I chose this topic."
Source https://humanap.community.uaf.edu/2024/11/20/comparing-ehlers-danlos-syndrome-tissue-to-normal-tissue/

23/01/2026

To say that NHS has reached a dangerous state would unfortunately be a drastic under estimation… it’s absolutely diabolical!!

I am at the Scottish Parliament on the 17th of February… more coming on that soon.

It’s almost time to get a group of us together to push NHS Scotland for a clear pathway to treatment, correct diagnostics and specialist review.

Follow new instagram in the comments. It’s going to take me a minute to get things set up due to being technically challenged … 👀 😂

All MRI and CT scans at Glasgow Royal Infirmary were cancelled for four days due to a lack of staff checks

23/01/2026