On Nicola Sturgeon’s resignation

I’ve been a bit too offline the last couple of days to post my proper thoughts re Nicola Sturgeon resigning. I’m a SNP supporter and an indy supporter. I am very sad to see her go. But I also respect what she has done for Scotland as a whole. I think that people outside Scotland, and especially in England, often don’t realise how popular a leader she is for many in Scotland, and how much her social democracy measures are appreciated here. It is too easy for pro unionists to look on from outside and view her as a minor and irrelevant figure. When for many in Scotland she is greatly appreciated, and does an important role. I wish her all the best in the future. I hope that we get a competent leader in her place. And I hope for democracy for Scotland and all.

Read Full Post »

Evusheld and private versus public healthcare in the UK

Really shocked at the cost of someone else receiving Evusheld privately in the UK, a preventative medicine against Covid to help immunosuppressed patients, many of whom do not generate any antibodies from vaccines. Unlike other countries the UK is not providing this publicly.

A single treatment of Evusheld lasts 6 months. It would cost up to £800 to the NHS but it’s not approved unlike so many other countries. It’s newly approved privately in the UK, and we’d been told £1000. Well someone I know has just got it. And it’s way way more than that.

£500 for consultation with a private doctor, £1600 for the drug, £160 administration. So about £2400, out of someone’s private coffers and that’s I think for just 6 months protection. This drug could save thousands of extremely vulnerable lives. Normal people can’t afford this.

I’m extremely lucky I’m getting some good antibodies, after 6 Covid vaccines (yes 6!). Though Covid vaccines trigger a devastating 3-month long neurological flare for me every single time. But Evusheld would make me feel safer, and protect others far more. Provide it on the NHS now!

Evusheld could be provided on the NHS to patients at considerably less cost per dose than private providers are selling it to patients directly. Yes it has a cost but for 500K people who are not being protected enough by vaccines and still at phenomenal risk it is needed now.

Read Full Post »

1810s Haddington library borrowings of Samuel Smiles father of the author of “Self-Help”

One of Haddington in East Lothian’s most famous sons is Samuel Smiles (1812-1904), author and government reformer. His best known work is a book called Self-Help (1859), arguing for the poor to improve their lot through self education and industry, a viewpoint that fits well with Victorian moral values and thinking, but might in some of its arguments raise eyebrows among many today.

Samuel’s father was also called Samuel Smiles. The other day professional genealogist Fergus Smith tweeted about a circa 1820 reference to the father, noting that he was working then as a stationer, not just the merchant he is often referred to in his son’s biographies.

This reminded me that I’d encountered the elder Samuel as a borrower in the free Haddington town library borrowing records I transcribed and analysed as part of my history PhD at Dundee University. Haddington was unusual at this time in having a free public library for its inhabitants to use, and its borrowing registers for many of the years 1732-1816 survive.

I thought it might be nice to blog here about what the father was reading. Each line below includes the date a book was borrowed from the library, the book borrowed details as noted at that time, and in many cases in brackets fuller title/publication details per the 1828 Haddington library catalogue.

• 1810 Nov 1 – Burns Works vol 2d (Burns’s Works, 4 vols, 1803)
• 1811 Jan 23 – Beauties of Scotland 4 Vo (Beauties of Scotland: containing an Account of the Agriculture, Commerce, Mines, Manufactures, Population, &c. of each County, 5 vols, plates)
• 1811 Feb 1 – 1 vol Rollins Roman (Rollin’s Roman History, from the Foundation of Rome till the Battle of Actium, 16 vols)
• 1811 Feb 21 – 2 vol Abercrumes wariers (Abercromby’s Martial Achievements of the Scots Nation, 2 vols)
• 1811 Mar 15 – Robertsons History on Amaresia (sic) (Robertson’s History of America, 4 vols)
• 1812 Feb 19 – 1 vol Cooks Voyages (Cook’s Voyages to the Pacific Ocean)
• 1812 Mar 26 – 2 vol Capt Cooks Voyages
• 1812 Apr 7 – 3 vol Coocks Voges
• 1812 Sep 10 – 1 vol Rolins History
• 1812 Oct 6 – 2 vol Rollins History
• 1812 Oct 15 – 2d vol Rollins History
• 1812 Oct 30 – Rollans History 3 vol
• 1812 Dec 8 – 5 vol Rolins History
• 1813 Feb 4 – 7 Vol Rollins History
• 1813 Feb 27 – 8 Vol Roilns History
• 1813 Apr 19 – 9 vol Rolins History
• 1813 May 4 – Rolins History 10 vol

It is likely that father and son borrowed books after 1816, but I did not have access to borrowing records for that period. The earlier borrowing records we have are a rare survival. The original manuscript registers are held in the National Library of Scotland in Edinburgh.

Incidentally Samuel Smiles the author appears in my writings about this library, because in his autobiography he recalled his early reading experiences at this Haddington library:

I did not make much use of the library. Patrick Hardie, the master of the English School, was the librarian; and when I took out Gibbon’s Decline and Fall, he havered a bit to me, in his dictatorial way, as to how I was to read it. I did not like this, and went to other libraries

To read more about the Haddington library at this time see either my PhD thesis or my Journal of Scottish Historical Studies academic journal paper about it. The latter is available freely online, via green Open Access rules, in the publications section of my personal website.

My Haddington library borrowing transcripts and database have been donated to the Books and Borrowing 1750-1830 project at the University of Stirling, and should hopefully appear online through that at a future date.

Read Full Post »

5th Covid vaccine coming up

I’ve my 5th Covid vaccine coming up this week. 5th vaccine because I am eligible for the Spring Booster because I am severely immunosuppressed. Previously I had the usual first two Covid vaccines, then a special bonus 3rd primary because I’m severely immunosuppressed, then my first booster just after Christmas.

It is very likely – well almost certain – I will flare neurologically again after Covid vaccine #5. I have after the previous four Covid vaccines. If so that will probably wipe me out almost totally for another three months, starting about a week after my vaccine this week.

So this is probably my last week of a bit of respite – a bit because I am often waking up late afternoon even in this brief respite phase since the start of April after my symptoms finally eased after my 4th Covid vaccine in December.

I may seem bonkers putting myself through this repeatedly with the vaccines. But they could save my life. My medics and I are agreed that I should keep getting vaccinated. My neurological flares I can recover from, even if it takes three months each time. It is also very likely I will get a 6th Covid vaccine in the autumn …

In no way is this an anti vaccination post. Vaccines save lives, and especially people like me who are severely immunosuppressed. I had a very poor vaccine response to the first two vaccines, but my bonus 3rd one (a special pre booster one needed because I’m severely immunosuppressed) gave me a healthy dose of antibodies, which could save my life. My first booster then extended that protection. Many severely immunosuppressed people have not had such a good response, despite loads of vaccines.

But the Covid vaccines take a terrible toll on me, because my auto immune neurological disease cerebral vasculitis is in my case so unstable. Each time I have a Covid vaccine I have three months of dramatically increased bladder incontinence, crippling headaches, sleeping up to 18 hours a day and phenomenal sedation even when awake, and appalling arm and leg control. It is amazing that I am not raging about this more. In my old consultant’s words I’m just too “phlegmatic”, which I eventually realised was a bit of a compliment!

I can access antiviral treatment if I catch Covid. I can also still access free testing to help me get treatment in time. What would really help though is to have the Evusheld preventative antibody treatment, which is designed to prevent severely immunosuppressed people like me catching Covid in the first place. But the UK government hasn’t bought any Evusheld yet, unlike just about every other comparable country.

Just don’t anyone say to me we are living with Covid, or even worse Covid is over, as a dental hygienist said to me the other week. I am getting through the pandemic, but at a terrible cost in terms of how the vaccines affect me. No way is it over for me, and many other people like me.

Read Full Post »

Living with Covid

Much of the current political discourse, especially in England, is about how Covid isn’t a problem any more, something we can live with. This is accompanied by removal of testing, so people will have Covid but not know. Likewise mask wearing isn’t being enforced, and many people stopped long ago. Note wearing a mask primarily protects others, not you, including the clinically extremely vulnerable you aren’t aware of just by looking at them. And this is all supposedly ok.

I’m one of those at greatest risk from Covid, being severely immunosuppressed for life, due to treatment controlling my incurable neurological disease and keeping me alive. I have been told very clearly by my medics that Covid could kill me and I must avoid catching it.

The first two Covid vaccines left me with very little protection against the vaccine. I am very lucky to have finally after my 3rd primary vaccine (an extra bonus vaccine given to the severely immunosuppressed in the UK) developed a good number of antibodies. But Covid could still potentially kill me, and I still need to avoid it.

I have been stuck in the house for two years, partly due to the risks out there, partly as my neurological disease rages. Both during the official shielding periods when I was advised by the NHS to shield, and after. The inequalities of so-called “living with Covid” are immense. It isn’t safe for me to go into a dining environment or coffee shop, or a general shop, or anywhere where people may be unmasked. Nor can I easily meet family or friends.

Yet even vaccines that may save my life have a high price. My unstable life threatening neurological disease has flared after all four past Covid vaccines. It takes me three months each time to recover. I have just about recovered from the December jab 4. I have jab 5 (Spring Booster) due any time now, which will almost certainly cause me to flare for another three months. But my medics and I are all agreed I need these vaccines.

It is no wonder I am so bitter at politicians and some of the public blithely dismissing Covid as a threat. If you haven’t lived in the shoes of someone extremely vulnerable, especially severely immunosuppressed, you can’t grasp what we’re facing, and why the risks are so high for us, especially now. In the last few weeks I have known many friends and clinically extremely vulnerable catch Covid. One friend with zero antibodies from four vaccines is fighting it now. The dangers to us are huge, but according to many politicians and the public it is just fine.

This post was prompted by a blog post from fellow academic Martin Paul Eve. He has even lower protection from the vaccines than me, and describes the situation he finds himself in eloquently.

Read Full Post »

Brexit and its consequences for rare diseases

I want to post about a consequence of the Brexit result that many people won’t have thought of: the impact on treatment and support for rare diseases. Since 1994, since the age of 22, I have lived with cerebral vasculitis, a 1 in a million diagnosis, which causes day-to-day symptoms similar to multiple sclerosis, but with the added bonus that it could kill me in a flash. Other forms of vasculitis are less rare, but all are rare. Vasculitis = inflammation in the blood vessels. In my case in my brain. Vasculitis is very under-supported by health services worldwide, causing huge difficulties and delays in diagnosis and treatment, which often leads to death. In the UK cuts to funding have impacted on cross-border referrals for vasculitis patients in Wales, seeking to go to centres of excellence in England, to get diagnosis and/or better treatment and support. And likewise for Scottish patients. Equally many patients in England have a considerable financial outlay, for life, for prescriptions of steroids and chemotherapy drugs that keep them alive. For life. No they don’t get these for free. Charities like Vasculitis UK are working to improve things, but it is a very hard job. Much of their funding and research comes from Europe, both in terms of money, but also working with colleagues elsewhere, to uncover new treatments, and improve support for patients. It is very unclear how this is going to be affected. My friends who are actively involved in Vasculitis UK are very worried. Before any Brexit-er tells me it will be ok, there will be a way, that it isn’t directly EU, or that the UK will replace the funding: no, we don’t know what will happen. And for such a rare diagnosis it is hard enough to get support as it is. The relationship with Europe for vasculitis research and funding is important. And right now the people who are working to save lives are very very scared. This makes me sad 😦 And scared myself.

Read Full Post »