Shout Out to Carers!

I always think it takes a special type of person to care for someone else.  It's not a career I would choose personally, but I admire those who do.  It's a job that many are good at but what about those people who find themselves in a caring position due to personal circumstances?  

I think sometimes the professionals can take a more objective view of caring.  I'm not saying they are never affected by a patient but they don't have the emotional connection that is there when you care for someone you know and love.  

My first experience of a carer was when my father became ill.  He had strokes, suffered from a deteriorating condition and suffered the early stages of dementia.  On an evening when my mother came home from work, all I wanted to do was escape.  Caring was lonely, and upsetting.  My rather used to apologise when I helped him, and this was heart-breaking.  He needed help to the commode, but would then apologise, and that always plays on my mind.  It wasn't exactly the dream father-daughter relationship, and not a situation we ever imagined ourselves to be in.

I lost my father nine years ago and he is regularly on my mind.  I am proud to have had the opportunity to care for him. 

Of course I care for my children too, but around 18 months ago, my husband's epilepsy worsened and I have had to care for him too.  I suppose my point is that when you care for someone you love, someone in your family, it's hard to actually admit that you are a carer.  From my point of view I don't feel like one, I'm just doing what I can in the situation I am in.  Caring in these situations comes unexpectedly, it's one of these categories you slip into without even realising it.  You have to change and adapt your life when illness occurs, and this can be difficult to come to terms with - for everyone, and especially the person being cared for. 

My town has its own caring charity and I was surprised at the number of young carers in the area too.  My children help out when my husband is ill, and sometimes I feel they take on responsibilities that at their age they shouldn't have to, however we are united as a family.  I have shown them what to do when their father is ill, explained about the different seizures, and they have also had talks with our local epilepsy charity which was helpful.  Don't think for a second that my children are far from perfect and misbehave regularly.  They are still young and sometimes they don't fully understand what is going on.  Maybe they don't know how lucky they are because a lot of young carers are from one parent families, hence why the children are the carers.  

Caring is hard, harder than a lot of people assume.  Watching someone you love, be ill everyday is awful and this must have an impact on the children.  Your own needs are last on the list because everyone else has to come first.  You have to be there for another person, on demand and it's hard to make any future plans.  

Let's just give a shout out to ALL carers, especially the young ones!  

Are you are a carer or do you know someone who is?  What's your experience?   

Cuts, Care and the NHS

I don't think that anyone can deny the unpredictability and strain put on our National Health Service.  I am not here to chastise the service but I am going to share a personal experience.  As well as many other health issues, my husband has a large brain aneurysm.  We have known about this since July 2014, although the MRI took place in the June and we were told we would be contacted if there were any problems, it took for us to find out by chance ~ my husband saying 'I suppose everything was OK with the MRI, seen as I haven't heard anything?' whilst on a routine check-up.  No news is good news right!  WRONG!  I had to then contact the initial consultant at the hospital who had informed the Doctor and arranged the MRI and ask what was happening.  Initially the receptionist told me he didn't have one and his Doctor was misinformed, but then two days later he got a letter in the post confirming his referral to another consultant/surgeon.  

We finally got an initial appointment for the September - which we have to travel to another town (not to our closest hospital but to the second closest - which isn't close at all) for the appointment as our hospital is slowly dwindling, leaving an empty, barely 25 year old. hospital building due to cuts.  The first appointment was cancelled and we got offered another two weeks later.

At the initial consultation, the coiling procedure was suggested and we had to wait around for a CT scan with dye.  After four hours in the hospital we left, being told that in 6-8 weeks we would get invited to the clinic.  Unfortunately, after chasing this myself, twice, and the Doctor chasing this a further three times due to other underlying health issues that couldn't be treat because of the aneurysm, he got three appointments for February 2015, seventeen-eighteen weeks after his initial consultation.

He needed an assessment with the nurse, then an appointment for the September - which we have to travel to another town (not to our closest hospital but to the second closest - which isn't close at all) for the appointment as our hospital is slowly dwindling, leaving an empty, barely 25 year old. hospital building due to cuts.  The first appointment was cancelled and we got offered another two weeks later.

At the initial consultation, the coiling procedure was suggested and we had to wait around for a CT scan with dye.  After four hours in the hospital we left, being told that in 6-8 weeks we would get invited to the clinic.  Unfortunately, after chasing this myself, twice, and the Doctor chasing this a further three times due to other underlying health issues that couldn't be treat because of the aneurysm, he got three appointments for February 2015, seventeen-eighteen weeks after his initial consultation.

He needed an assessment with the nurse, then an appointment with the Consultant two days later to give his consent for the procedure, and then a further date for a procedure two weeks later. The procedure wasn't to get rid of the aneurysm though, it was for a cerebral angiogram - basically they put a tube in your groin, feed it up to your neck and put dye in to see how the blood can flow through the aneurysm - all amazing stuff, but as they go through a main artery this was a day surgery procedure.  

After waiting an hour for the first appointment to take place, the Nurse came and got the Consultant to do the consent that day, to save us having to travel back two days later.  We were really grateful for this as travelling and paying parking charges was horrendous and took so many hours out of our day, meaning we had to arrange childcare for our three children.  She told us that the third appointment needed to be changed to a day later than originally planned.  We agreed but then the Consultant called her out and they offered us a procedure for the next day.  We returned hope that the cerebral angiogram was going to happen sooner rather than later and we prepared an overnight bag, childcare as we had to go in early hours and stay most of the day.  We were told that the procedure could be cancelled on the day if no beds were available on the allocated ward, due to emergencies, so we had to call the ward before 7am in the morning to find out what time we needed to go to hospital.  

Much to my husbands dismay, we then got a phone call that evening to inform us that no beds would be available and we needed to go back to the appointment offered earlier that day, a day later than originally arranged.  

On the morning of the cerebral angiogram, I telephoned the ward at 6am and the nurse told me to call back at 8am as she didn't know if the procedure was taking place.  I telephoned back at 8am but struggled to get through and at one point someone answered and said 'We are busy on the ward at the moment, please call back in ten minutes' and then hung up.  I left it ten minutes and then I called again, and I called, and I called.  Eventually someone answered but then returned the telephone to the receiver and I got a cut-off dial tone.  I eventually got through after twenty-five minutes to be told that as far as they were aware, all electro-procedures were cancelled for today, but that the department who did the scan should have called to cancel as it was decided yesterday evening.  

So... both the ward and department knew that the procedure was cancelled the day before, yet nobody could let us know or even tell us at 6am when we called! 

They gave me the telephone number of the scanning department to call after 9am.  y the way, my husband was nil-by-mouth and I still didn't have a solid answer as they only said 'as far as they knew' and then gave me that number.  

Of course the ward, blamed the scanning department, and the scanning department blamed the ward which infuriated me even more.  I was told 'well it says in the letter it can be cancelled due to lack of beds on the ward'.  My husband wanted to cancel the procedure because of how we had been treat.  How is this patient care?  How is blaming on another professional behaviour on the telephone to your patients?  

My friend had taken the day off work to be around for my children in between school and nursery.  Everyone was on stand-by, yet just like that, it was cancelled.  My husband has several health issues at the moment, and I work, but there was no thought at all for our circumstances.  

Another frustrating part was that I rang to complain several times and even their complaints team wasn't available.  I ended up sending an email - this was at 9:10am - they called me back at 4:10pm and I explained how concerned I was with their lack of organisation and care.  I explained it wasn't the fact that the procedure was cancelled, it was the lack of concern, or compassion, the fact that nobody could accept responsibility for not letting us know, and what was the point in sending a letter asking someone to call at a specific time if nobody could give them an answer?  

He did get the procedure, a week later - this week in fact. Again we had to ring before 7am.  I asked them to change the day from a Tuesday as this was the most difficult for me to arrange childcare, but she said 'Well the consultant wanted to see him as soon as possible, and if you want a Monday, Wednesday, or Friday, it will be a longer wait plus as these are days that the anaesthetist is available and your husband doesn't require one, he has more chance of being postponed again.'  I told her to leave it at Tuesday then as I thought it was important, and not to concern herself with out personal circumstances. 

Just to reflect on my experience - cuts are still being made in relation to the NHS - what happens if further cuts are made?  Clearly, the NHS staff are so stressed that they are losing sight of what's important - their patient care.  I do feel for them, it's a hard job and not a one I would like to do.  They provide an unpredictable and vital service, and they save lives, we need them!  

My husband is not able to have the coiling procedure as the angiogram found that the aneurysm has grown, is shaped awkwardly, and some of the veins are already blocked as the dye didn't go through as it should've done.  I think this is so important he gets this operation, and I know it's not personal, but I am worried that it bursts which we have told would most likely be fatal.  I ask, is this what we will see with more financial restraints - Doctors being forced to only provide operations as emergencies occur (like burst aneurysms) due to lack of resources and them not being able to cope with patient levels?  

Our NHS needs support to prevent these happen!  

Whilst on the ward, I could hear people talking about an empty ward upstairs, when operations were being cancelled after my husband was admitted because the beds were not on that ward.  I mean if this is an ongoing problem, it is only going to get worse so why isn't anyone looking at extending the ward, or using another ward too.  

I think care is important here - this is a supposedly caring service, but pressures like costs and lack of organisational skills are preventing the service from being most effective.  I must admit, that once you do get in to have your procedures the doctors and staff are amazing - the things they can do are unreal!  I am always of the view that you treat others as you want to be treated so I think that the NHS is in need of our support right now - CARE for the NHS, so that they can CARE for you.  

I realise that there are a lot of people in the NHS that get ridiculous amounts of money, but lower pay-grade staff like the nurses provide a great service and they need to feel appreciated, yet they struggle to get a livable pay-rise.  I feel that this lack of appreciation is starting to reflect the way that they treat their patients in some cases.  

OK, so it can be argued that this was one experience but really it was a series of experiences.  I was also talking to people in the day-room who had also had similar experiences and it was frightening to know that others had endured a similar fate.  Again, this is only one hospital - but it is a hospital with a good reputation.  They closed the hospital in my town and now we have to go to a nearby town.  That hospital can't cope with car-parking of the people travelling in, never mind patients and the strains are apparent there too, which is putting further strain on the hospital in question.   

To the powers that be, the saying goes 'you can't put a price on health' but clearly this is happening.  Stop cutting services and risking our health!