An art journal page on "time".

I wasn't going to do this, I wasn't going to discuss the current situation with Covid-19.  I wanted to distance myself from the stress of it and also provide somewhere others could get respite from it if they need to so with any luck this will be both my first and last post about it.

Unfortunately it has worked in such a way that in trying to do the right thing minority communities are being forgotten and it's time there are as many advocates for those as possible, because of some recent experiences and support I've subsequently received to help me with pushing for things to be made better I've decided that whilst my blog might not have many viewers and readers if just one person can understand how important it is that the forgotten people in this society whether that's by the government, local authorities or by individuals or even large numbers of people in the communities are remembered and there's an effort to reach them, then it's one step towards change, a change for the better.

Many of you who have tortured yourselves with my blog over the years will know I am deaf but also a carer.  The current situation impacts both singularly and then there is the cross over that makes things suddenly all that more difficult.

Being socially distant and being deaf means:

• I  Cannot hear from 2meters away
• I cannot lip read sufficiently from behind screens that reflect light or people with masks
• I cannot use live translation an app that translates speech to text from 2meters away or through doors/buildings
• I cannot use relay because more and more places are refusing the service due to the time it takes to receive and make a call through relay
• I cannot hear on the phone
• Everythings is via video the delays that occur due to internet speeds and connections mean I cannot lipread
• I cannot hear via video link
• None of the social network sites or apps provide subtitles/captions for live events
• Subtitles/captions on live news updates are very poor and the summaries are not detailed enough to get full details on what we are expected to do
• As individuals we are socially isolated from each other and the hearing community because of the exhausting effects of communication being forced to stop socialising in person has removed what little socialisation we had.
• Deaf and Hearing Impaired people are twice as likely to have mental health probelms especially depression due to social isolation...this is likely to increase because of a lack of BSL and Subtitles/captions avialable for important information on Covid-19
• Deaf and Hearing Impaired people are twice as likely to suffer Anxiety, and or Deaf Anxiety, I myself have had Deaf Anxiety for decades and struggle to control it when I'm unable to access information, unable to use technology to communicate and when people disgard disability awareness in order to put social distancing first.  

Being Socially distant and an *"unpaid" carer means:

• All domicillary and respite care is suspended so I am unable to leave my caree to go shopping, collect prescriptions, get medical aid myself, exercise or protect my mental health.
• I am not able to access masks or gloves to prevent the spread of infection {skin or wound} because I am not part of the NHS or Paid Carers via an agency, when they are available they are very poor quality and break easily and extremely expensive, almost treble what they are normally and I'm not entitled to any freebies
• My hours have increased...I was previously doing around 90hours per week I'm now doing well over 100hours a week, nearer 110 hours if I'm honest.
• I've become a Nurse and Dr because my caree is elderly and high risk they will not be seen as an outpaitent for a long term heart condition so I'm having to monitor it.
• My Caree has Cellulitis but as per above I'm the Nurse who recognised the symptoms contacted a Dr and had to confirm diagnosis through a series of questions on the phone, because they won't see her in person, so the Dr on the phone can put up a prescription
• I'm chef and shopper, whilst I am high risk myself I don't automatically qualify to shop during the vulnerable hour because I'm not a paid carer and nor do I automatically qualify for priority delivery I've had to fight daily for two weeks to get delivery.
• I'm a pharmacist who has to manage medication, make sure doses is accurate, it's stored correctly and monitor how it interacts with other medication, allergic reactions and add in pain relief, antinausea medication and steroid creams as and when necessary where previously I would have spoken to a pharmacist
• I have no uniform because I'm not a paid carer I have no access to a uniform so although I carry an alert card it's still discretionary as to whether or not police would allow me to continue on my journey.  There have been instances with other unpaid carers where the journey has been denied....this will increase hospital admissions putting a strain on the NHS.

*An unpaid carer is someone whose not employed by an agency, an individual, a care home or the NHS. Yes we care, we give our lives to help someone else. We are paid an allowance, yes it's really called an allowance just like teenagers who have moved on from pocket money and have a monthly allowance to spend as they will.  The amount is pitiful and I can confirm that working 90 hours a week it pays a grand total of 50pence an hour.  The more hours you work the less you get per hour.  Even the minimum hours you work to qualify being an unpaid carer does not earn you minimum wage per hour.

So what does it mean to be a Deaf Carer during a world wide pandemic?  Well in some ways it's no different.  Many friends disappear when you cannot always drop everything when they have time for you.  Being a parent trumps being a carer so when I cannot make more effort than them they don't want to know.  We are already socially distant because unless we have access to respite care we cannot physically see any friends we have left.  It's very similar being deaf, social activities are stresfful, difficult and exhausting so they too tend to be few and far between.  However as a deaf person we rely entirely on technology to help us when in the physical presence of others.  The further away from a person I am the less technology works, the same with phone calls they take longer because everything is translated through a third person [whose subjected to GDPR] and with so many people phoning everywhere thye don't have time for that.  This means I have to make regular phone calls including to NHS 111 and struggle to hear unfamiliar medical terminology and make sure I don't get anything wrong because that could be fatal.  

A delay in reaching my caree or leaving them alone too long could mean medication is delayed and that can cause stroke, heart attack etc.  There is also the risk of falls, dehydration and lack of personal hygeine can also lead to infections.  Infections cannot be contained because we are not able to access gloves or hand sanitizers.  Most stores have redirected their supplies to either their staff or the NHS.  It's great I DO support the NHS I really do but hospital admissions will go up if unpaid carers cannot prevent the spread of infections too.

I also struggle to collect prescriptions I can't hear when I'm called into the store, or the security questions being asked or any information they need to tell me about the medication.  It's just a nightmare.  I'll be honest this morning* I did manage to sucessfully negotiate a call to NHS 111 and then multiple calls from a Dr which resulted in confirming my diagnosis and a prescription was put up that enabled me to provide quick treatment and care for an infection.  This won't be the case everytime though.

The new rules about restricting travel, not being able to speak to a medical professional either face to face or via relay increases the pressure, it creates anxiety for everyone but more so for carers.  I've seen on social media how deaf people are unable to speak with mental health professionals because they cannot hear on the phone and there are no face to face appointments so not only are we twice as likely to need help we cannot access it...if that does not change suicide amongst the deaf community will rise quickly and dramatically.  

So to combine these two things and to use mathematical terms and create an equation stress and anxiety is increased regarding the increase in care required to being deaf and twice as likely to suffer from depression and anxiety means it's almost 100% certain there will be lots of anxiety, panic attacks and or depression.  

Despite my rambling the message is simple at the moment the deaf community have been forgotten, deemed unworthy by the lack of accessible information and lack of access to health care.  Some of us have been forced to lose our independence because shopping is now impossible because we aren't allowed support from someone else and neither can we cope alone when deaf awareness has been discarded.  Carers are forgotten we, nor our carees are worthy of equipment that will help us keep hospital admissions down, for me personally I've long since given on getting any recognition or thanks from anybody for what I do but at a time like this where extra pressure is put on us it would be nice to discover we are known about and that we count as much as the professionals who work in this area.  If you are someone in a position to simply say I support unpaid carers or I support the deaf community whether that's quietly behind closed doors to an individual or publically...I can guarentee that it will make a difference a big difference to individuals and the communities of these people because right now we are INVISIBLE.

*As I'm sure many of you have worked out I have written this on the day I found I was denied technology and forced to struggle to use the phone to contact NHS111, time has passed between that day and this going live on my blog because I hadn't finished making the art journal piece to go with it.  That's because as a carer I don't have all the time in world to craft...I have to take snippets of five minutes here and there to do what I can when I can.  

Since I started this post a lovely woman who I follow on twitter has VERY kindly offered me some good quality gloves to carry me over whilst my caree has a skin infection, I offered to pay but she refused...I'm so happy and grateful I actually cried.

Devon carers have reported we can use our alert cards as identification with the police as being a carer but that does not mean our journeys will not be refused.  There is still a limit on how much we can travel.

Another piece of good news is that I have a couple of wonderful friends who have checked in with me this week and have made things a LOT easier and for that I am truly grateful and inspired to make some thank you cards.

I have rambled on rather a lot so it's over to my art journal page.  I was sorting images and when I saw this one I knew exactly what I wanted to do with it and the instant I saw it the quote I've used popped into my head.  Whilst we aren't allowed to go anywhere, to see anyone time is something we all have on hands and whilst I mentioned a string of negatives above having the time to not rush too and from appointments or trying to juggle everything this enforced slowness is something I REALLY enjoy.

I wanted to heat emboss a clock background but it REALLY hasn't worked the resist glue just seeps under the stencil and there are no clear lines but although I wanted to rip the page out I decided not to because nothing in life is perfect and therefore we have to accept our imperfections and this is just one of them, it still conveys the message I wanted it to have...that we have time it's just how we choose to use it that really counts in this life.