A Hairy Problem

I woke up this morning to the following article on the BBC News website:

"Alopecia patients call for NHS to fund real hair wigs"

https://www.bbc.co.uk/news/uk-wales-46194962

1) Why are people with alopecia being 'treated' on the NHS??? A condition of hair loss is not an illness and there is no treatment. 

2) Wigs are purely cosmetic and the NHS should not imho be funding things that do not improve a person's health. 

As synthetic wigs ARE provided on the NHS it's not like there's nothing available for those who can't afford such things. NHS glasses used to be ugly af - if you wanted something nicer you had to pay for it. If you couldn't afford it you were stuck with functional. The voucher system on prescription specs has helped with this and maybe could be applied to wigs...but there are opticians on every high street in a way that wig suppliers just aren't. Not to mention the shortfall would be drastic and still price a lot of people out of real-hair wigs...but that does not mean the NHS should foot the bill.

"For many people with alopecia, wearing a wig is an essential part

of managing the psychological impact of losing their hair;

those who wear wigs for medical necessity

don't see their wig as an optional luxury."

3) As the impact of alopecia is psychological the treatment should also be psychological. However, as much as I feel for the mum in the article whose teenage son hasn't received any counselling for his hair loss I would point out that even after a suicide attempt many kids have to wait ages to see a counsellor. IF there's even a referral, that is; my kid didn't get counselling for 6 years!!! OBVIOUSLY that's not saying one psychological issue is more important than another but the system is already unfit for purpose - spend NHS money on improving counselling services for ALL conditions and you save money on dozens of other things; such as A&E visits, addiction services, eating disorder clinics, and maybe even wigs. 

Usually I argue for treating the cause, not the symptom but there is no known cause for alopecia so there's no choice but to go after the symptom...the symptom is lack of hair so address that with a wig, but that doesn't address the real issue which is psychological impact. Wigs are a band-aid solution, fixing nothing.

"Your hair is the first thing people see...

I've always had long hair, it's part of my identity."

We are socially conditioned to think that people (particularly women and younger men) should have hair while older men get a pass, baldness even being seen as attractive in some instances. It is cultural too - shaved heads being normal in many cultures. Addressing the social norms of hair and the psychological impact of losing it would be far more helpful in the long run. Those with baldness shouldn't feel obliged to hide it.

Taking the idea of hair being 'essential' to the extreme, you could in theory argue that if hair loss is to be treated as a medical issue then hairdressing, grooming products, razors etc should logically be available on the NHS - for those with conditions such as male-pattern baldness or excessive body hair for example. Actually, that's a bad example as male-pattern baldness and excessive body hair usually are related to hormone levels which could actually be treated medically...

For myself I could wrangle an argument that being stuck with my natural hair colour is detrimental to my psychological well-being. True but ludicrous. But so is arguing for a wig because your hair is your identity. Just because you've always had something doesn't mean you will, or can or should, always have that thing. You can get false teeth on the NHS cos you need them to talk and eat properly. You can get functional prosthetic limbs on the NHS but cosmetic ones cost extra because they are not medically necessary. What function does hair even have?! Answer is: none at all. 

Next issue: women from poor countries being targeted for their hair.

https://www.mirror.co.uk/news/world-news/ugly-truth-behind-multi-million-7513507

Yes, this particular article from 2016 cites the beauty industry's demand for hair but it would be naive to think there is a clear line separating cosmetic hair pieces from wigs for those with alopecia or cancer. Human hair has to come from somewhere and most of the time it's poor women being exploited. There have also been stories of women being attacked and their hair cut off - some baseless rumours, others may be for motives such as humiliation - but in a world where human hair has monetary worth such things are liable to happen.

I'm not saying there shouldn't be an industry based on human hair but I'm saying there is an ethical argument against the NHS buying into it.

In the western world we see altruistic kids having their hair cut off for people with cancer but that's just a strand in a big ol' hairball. I don't think many people really consider where their real hair wigs and extensions actually come from.

In Les Miserables by Victor Hugo (1862) a desperate and destitute Fantine sells first her only possession of worth - a locket - then her hair and teeth, then finally falls into prostitution; scenes which are deeply distressing to a modern audience - be it the book, musical or the 2012 film (with Anne Hathaway winning an Oscar for her portrayal of Fantine). Set the best part of 200 years ago you'd hope that such events were firmly in the past but clearly they are not. No 21st century woman should have those life experiences.

Most of us accept the idea that the NHS is underfunded but with a limited set of resources should this even be open for discussion?! Essential services that save lives HAVE to come first. The NHS should be about what you NEED not what you WANT. Waiting lists can appalling - months waiting for cancer testing and ECGs. My mum waited 4.5 months after discharge from hospital for a physiotherapy referral - she now refuses to go because it has been 'too long'. That will inevitably impact her life expectancy as her mobility continues to deteriorate. These are things people NEED - not prettier wigs.

One more point before my rant comes to an end: IF the NHS were to supply real hair wigs who would be responsible for the products and care required to maintain them?! 

Bring My Bones Back Home, I Don't Need Them Any More

And bury me all alone, keep my memory.

The title, and that line, are from an Ashestoangels' song "Bones Part 1" from A Trauma Shared. This is a very important song to me as it is one of three tracks I tend to play on loop from that album. The others are 'One Last Glance' and 'Endlessly'. They've been on loop for me 7 months tomorrow...since my mum's stroke. And that is why those words seemed so apt for this blog post.

This link should take you to a BBC video 'Where's the right place to bury your parents? - Deciding where to bury your parents if they were not born in the UK'

https://www.bbc.co.uk/news/av/stories-46212155/deciding-where-to-bury-your-parents-if-they-were-not-born-in-the-uk

Case studies: Tosin lost her parents in quick succession, both aged 52. Her Nigerian born dad was buried with his dad and brother in London - they did not know his wishes; her mother was cremated and scattered in 'her father's land' - also Nigeria - according to her wishes. Ndu had to call elders in Nigeria to approve burying his father in London.

"I just did the best that I thought I could" - Tosin

This is a hugely important point. If your loved one did not leave specific instructions for the disposal of their mortal remains it is okay to do what is right for YOU. Do not assume that their not giving those instructions was because they left it too late to have that conversation; if it was that important to them they would have said or left a document with their directions. Tosin's decision for her dad is also based on decisions within his family - if the UK was a good enough final resting place for his close kin there's no great reason to suspect it wasn't good enough for him. Additionally, despite her dad dying first Tosin's mum was clear she wanted her ashes to go home to Nigeria. Do not feel bad about splitting up a couple who have died. If they wanted to be buried together fair enough but if the last surviving wants to be elsewhere then that is right too...

...which is not to say there are right and wrong answers here. Honouring someone's express wishes are, I suppose paramount, but where those wishes are absent, unclear, or unable to be fulfilled an executive decision must be made. And while you can take your lead from family precedent you can also do what is right for you.

Tosin also speaks of the fact she has a place to visit for her dad and Ndu agrees that this was an aspect of his decision for his father. Some funerary rites are for the deceased - such as ancient Egyptian mummification or the Catholic last rites - but most are for the living, a chance to say goodbye, to mourn, to let go - these include most funeral and memorial services, wakes and tombs. This is why, in my humble opinion, it has to be about what the immediate family want: it's THEIR goodbye more than it is the deceased's last hurrah. 

I have never yet had to make these decisions, and my parents are UK born and bred, but here's my take:

My parents went on holidays for a while after I'd grown up and left home and I was given instructions on what to do if they died out there - I was to have them cremated. Repatriating remains was a ridiculous waste of money and I was absolutely NOT to do that. My parents' have a VERY practical take on this.
I can understand the need to repatriate remains when someone has died outside their native land whether on work, holiday or, historically, via the slave trade. However, if someone took the decision to live their life in another country...well, maybe it depends WHY you decided that. If it was for work or a partner maybe you always wanted to go home. Or maybe you migrated as a child and the choice to not return 'home' wasn't really viable.
My parents have lived most of their lives within a radius of just a few miles - is that because they are deeply connected to the place or is that just happenstance? Happenstance seems most likely.

My maternal grandparents died close together in 2000. My mum fell apart and I was told to stay away, which I respected. However, both my grandparents were cremated and scattered so there is no goodbye, no paying my respects.

My paternal grandparents are a different story. My grandfather died long before I was born and was buried. I only plucked up the courage to ask to visit his grave after my other grandparents died as it suddenly felt like a terrible omission. A few years after that my nan also died. Despite 38 years of widowhood she was buried with him. Again I wasn't welcome for the funeral but I have visited since and seen the new combined headstone.

Meanwhile I have been to two funerals ever. The first was my cousin Allister in 2016; his was a church service followed by cremation. His ashes were scattered at a favourite spot. I remember thinking, somewhat inappropriately, that my kids had better not try this kind of a send off for me as it would be pitiful in comparison. Allister's was standing room only - he had lots of family and friends, colleagues and running mates - my turnout would be about 5 people. Maybe. The second was my great aunt Ben (Rosalind Brenda by birth). Hers was a simple crematorium service with maybe a dozen or so attendees.

My parents have always talked about death but neither has made much in the way of specific plans. Not from an unwillingness to talk but from an "I don't care, I'll be dead" mindset; but both decidedly prefer cremation. My mum has a prepaid funeral plan and as she has more family she'll need some form of service. I'd prefer church although I know that's not her...so most likely it'll be a crematorium. My dad isn't close to his surviving family and he's a no frills kind of guy so direct cremation seems likely. If at all possible I'd like to keep a funeral home out of the proceedings - I'd like to shroud them and so forth myself.

But then there's what to do with their ashes...

Once upon a gazillion years ago, when my parents were still together, my dad expressed the desire that I should chuck a handful of my mum under a passing bus...I find myself wondering how many handfuls there'll be...*mutters darkly* I certainly wouldn't mind chucking some of him under a bus.

I'd like to bury at least part of their ashes somewhere - not because I want to keep them when they're gone cos that's kinda weird and it's not like we're a close family anyway - I just don't like the idea of being completely gone. I'd like there to be an inscribed stone where I can lay flowers and tell my grandkids what annoying gits they could be. That's the sort of thing I would want for myself...a stone that could be visited intermittently and ultimately forgotten and when the weather has removed the inscription it'll be done.

Although, for my dad, he's been talking a lot about a place where he spent summers as a kid. I kept trying to talk him into going back for a visit but I doubt he ever will. I offered to go with him / drag him kicking and screaming ...but now I'm caring for my mum I can't. I think I'd like to take his ashes there.

I know I'll have to make these decisions sooner rather than later. Along with stupid, unimportant decisions like readings and music. That said, I'm kind of glad those decisions will be mine. Having specific directions and disliking them or failing to adhere to them would be so unpleasant.