Monthly Archives: March 2017

Chronically commuting

A picture of me with London Underground roundel face paint

There are temporary toilets at Euston, fascinating I know but this meant walking from one end of the station to the other a minor inconvenience for many but something simple that ate into my already rapidly reducing energy supply.
If my body had a battery symbol it would currently be edging towards red, unfortunately I can’t put myself on low energy mode and I still have to get home. A simple thing like using the toilet or accessing public transport can become a mission when you’re disabled, people who live with chronic health problems and limited energy will talk about the importance of pacing (something I’m pretty bad at I am however an expert at crashing and burning) but along with pacing comes planning. Most people plan a journey especially if it’s somewhere unfamiliar or timing is needed but planning the most accessible journey involves more effort than a journey from A to B.

The standard London transport tube map

I’m not a wheelchair user and I can manage a limited amount of stairs so I’m less restricted than many other disabled people but the London Underground is not disability friendly (I’m not unaware of the age of the system and challenges in making it more accessible) but after working out where I’m going the next step is seeing if there’s a lift and whether that’s for all the station or just parts of it, is there a reduced escalator service (my balance and coordination and using a stick make escalators a challenge), if I get on a train part the way along the line can I get a seat, how far will I have to walk from the mainline to the underground. Often I’m tired before I’ve even started.

The accessible tube map

Energy isn’t just expended physically though, social interaction can be draining, thinking, talking, trying to follow the flow of a conversation can also be tiring especially when you throw in the neurological problems I have as a result of a brain injury at birth which left me with hemiplegia (I seem to have unknowingly won some kind of anti health lottery) all these things can add to fatigue and despite my  love of the city i can’t deny that Londoners are not the most patient people to be crammed on a train with.

People dismiss the idea of FOMO as another trivial millennial, Generation Y non issue but when you’re already several years behind your peers it’s hard to say no and slow down even when you should. Chronic illness, mental health problems, disability often do mean missing out of things or choosing one thing over another and in an age where we can see more and more of what people are doing with their lives without having to spend time with them it’s hard not to feel it.

Cost and sustainability

rant1

A blackboard with “rant of the day” printed at the top and the letters NHS with pound signs drawn in white chalk

I had a list of things I wanted to blog about so instead I’m going to write about something completely different which came up few days ago.

I’ve been trying to get more into doing work outside of Mind which uses my lived experience of having mental health problems, last week I attended a workshop on Outcomes Based Commissioning (OBC). I’ve learnt that mental health meetings and groups loves acronyms, an alphabet soup of conditions, job roles, legislation and projects.

I’d like to tell you more about exactly what that is but honestly I’m not entirely sure myself. I can tell you that 8 organisations some statutory such as the NHS and some charity such as Mind and Spear are working together to change the delivery of mental health services in Richmond and somewhere in all this they’re looking for contribution and input from service users, carers and people with lived experience of mental distress.

One of aims from the mental health service is to ensure sustainability and deliver cost effective treatment, I have a couple of issues with this. 1) you cannot guarantee sustainability, you can do your best the make services sustainable but don’t make false promises especially to vulnerable people, 2) cost, now unless you’ve been living under a rock you’ll know that the NHS is chronically underfunded and overstretched; mental health has always been refereed to as the Cinderella service and when the going gets tough the tough gets cutting and mental health is often one of the first areas to feel these cuts.

So what’s the problem with pointing this out or looking to save money? well mental health already comes with a nice big serving of guilt for many people, guilt for putting pressure on loved ones, guilt for not working, guilt for being unreliable and it’s hard not to feel the need to justify the cost of treatment as I wrote in my last post I’ve been told by Drs in a&e to consider how long it took to treat me compared to the time it took me to cut myself, I’ve been questioned on why I called an ambulance despite feeling faint from blood loss. I didn’t choose to have mental health problems, my actions may be my choice but having these issues is something beyond my control partly due to my upbringing and home environment growing up.

Having the cost of treatment pointed out or hearing the providers talk about services being cost effective makes people feel guilty for something they can’t help and even puts people off seeking treatment whether that’s for self harm (I know people who will suture or glue themselves) or more long term treatment like psychotherapy or counselling.

The financial situation with the health service is complex but nobody should be made to feel guilty for needing healthcare or social care or feel they don’t deserve the help they need.