More on customer service

I blogged a couple of weeks ago about some disastrous customer service I had received over a couple of days, and am pleased to say that some things have been resolved and some are still on going. 

The Long Tall Sally issue was resolved remarkably quickly. A lovely CS rep agreed that it wasn't good enough to leave me waiting 4 weeks before informing me something was out of stock so I got a more expensive item for the same price and had a refund of my delivery charges which I was very happy about. 

Southern Railway unfortunately have still not responded. I have chased them up today to limited success. But I shall keep blogging about them until they rectify the situation that left me embarrassed and out of pocket.

In the meantime the news last week that the NHS has drafted in Sir Stuart Rose to help with customer service is music to my ears. I have long wanted to write about the woeful customer service that I have experienced in the NHS and now at last I feel I can. 

Imagine this scenario.

You have decided to take advantage of one of THOSE sales, you know the ones I mean, that start at 8am Boxing Day and definitely end some time on a Monday. You've driven to the retail park, found a parking space, (persuaded the husband that you really need a new sofa/bed/dining room table), entered the store and found an assistant. You've chosen the furniture you want and it comes to sign the deal.

But instead of signing the deal there and then, the sales person disappears and comes back a few moments later and says that you can't sign the deal until Wednesday. 

Do you accept that? No, why would you. You are there to make a purchase and want to make a purchase there and then. 

Why, then do we accept this from the NHS?

My previous admission to hospital and subsequent transfer to Royal Surrey was, I was told, an emergency. Why then having been transferred on Friday did I have to wait until Wednesday to get any kind of treatment or test? Then having had the treatment and tests was I told that there was nothing they could do this time and left sobbing on my bed with no one (nursing staff etc) knowing that the Dr had even been in to see me. 

Imagine another scenario. 

You have £50,000 to invest (yeah, wishful thinking, I know). You call the bank/financial advisor to make an appointment to see them and discuss this. Rather than offering you a specific appointment they tell you that the only way that you can see someone is if you arrive at 9am on Tuesday morning and wait until they are free. This means that you might be seen at 9.15am or you might wait in the waiting room until 4,15pm. Do you accept this? Of course not, you call another company that offers appointments. 

But as an inpatient in hospital this is precisely the scenario you face day after day. You see someone who says you are going to have an endoscopy, or a CT scan or some other procedure. But no one can tell you what time it will be. Frequently I have found myself being taken for procedures during visiting hours. This leaves me wondering whether my visitors will turn up and then leave or what they will be told. Some procedures mean that you don't get taken straight back to the ward so you might miss your only bit of normal life due to the inability of the NHS to schedule, 

Now, I know there are emergencies and these take precedent. But what about the patients. These people are in hospital and are at their most vulnerable and there is no thought given to treating them like human beings. Because you are an inpatient you feel like you are not an equal member of society. 

I was transferred to Royal Surrey as an emergency, yet it wasn't to much of an emergency as I wasn't given any kind of treatments or tests until Wednesday. 5 days of waiting. 

This wouldn't be acceptable anywhere else, why is it acceptable in the NHS?

Why can the NHS not give people times for appointments as inpatients to ensure they don't miss out on seeing their loved ones, who may have travelled a considerable distance to see them. 

I could go on and on. I could tell you about the fiasco of dealing with multiple NHS trusts with different rules and procedures who can't communicate with each other. The contradictons and excuses given. 

What it comes down to though is that because the NHS doesn't have shareholders and profits, it isn't accountable in quite the same way as a business and so the 'customer' will never be the focus of the organisation in quite the same way. This is the real problem with customer service in this country.

On my 12th day in hospital, the consultant said to me

We have a plan to send you home.

But before we get to that let me give you a quick run down of my week in Royal Surrey. 

After 2 nights in a bay with 5 other women (mostly elderly, some missing some marbles, several deaf ones and most of them unable to use their buzzer and who insists on shouting for the nurses) I was moved into a private room. 

There are benefits and drawbacks to this. 

I don't spend the time my children are visiting telling them to be quiet etc, I don't have to worry about using my headphones for the radio or tv I am choosing to watch and can nap to my hearts content. On the negative side, it is very isolating. You don't have a constant nurse presence or anyone to chat to, even if I don't want to chat a lot of the time. 

A couple of times I waited 20/30 minutes for my buzzer to be answered or pain relief to be bought. But I am planning a post on this later.

Despite the fact that there are consultants available over the weekend nothing got done. Even on Monday and Tuesday nothing really happened. 

On Monday I got a chance to look at my CT scans and see both my liver mets and my tumour in my stomach. But I really felt like screaming, feet were dragging. After all I had been moved because I was and emergency and needed rapid treatment and in my mind nothing seemed to be happening. 

When I finally saw the consultant on Tuesday he told me that they had decided to do another endoscopy on Wednesday which may invovle having a shunt inserted into my small bowel to prevent it narrowing. The other reason was too look at the tumour and try and ascertain which blood vessel needed embolising to prevent further bleeding. 

I spent Wednesday morning waiting and was finally taken down to theatre at 12:30. The reason I was taken to theatre was because I was going to have a general anaesthetic. I am a bit difficult to sedate apparently and need quite a large amount of sedation relative to a normal person. But can someone please define normal for me.

I woke up in the recovery room with a huge needle in my left arm, with my fluids going through it. It was really sore and I couldn't wait to get it out. 

After about 45 minutes I was taken back to the ward and hoped to get the cannula out before the children arrived. Alas that didn't happen, but once the fluids finished you can bet I was on the case and buzzer to get it out. As I type (4 days later) I still have a scab and substantial bruise where that cannula was. 

I had hoped to see the consultant later that evening, but nothing. I had hoped to see Dr Cummins ( my oncologist) at some point as he was the person who requested my transfer, but nothing either.

I finally saw the consultant late on Thursday and he basically told me he was not prepared to do anything until I bled again. To be honest, he needs to work on his bedside manner. He had no empathy with my fears and did nothing to try and address how I was feeling. He just told me he was not prepared to operate at the moment and all he would do was send me home with a letter for me to give to anyone if I collapse again telling them to take me straight to Royal Surrey for emergency admission to be operated on immediately. 

I was in tears, it was like he was asking me to take my life into my own hands again and put it on hold, hoping I would bleed again. I tried to explain this, he just wouldn't listen and had no reassuran or anything. In all he does not deliver good customer service. 

The team must have been gone for about 5 minutes when Tony walked in and found me in tears. I was not coherent and could not articulate why I was so upset so Tony went and found Paul (one of the other Dr's involved in my care) and came back understanding how I felt and what had been going on. 

Shortly after Tony left Dr Cummins finally arrived to see me. I explained my disappointment at nothing being done and how slowly it appeared to have happened. 

On Friday I finally realised that they were going to let me go home, and so started the preparations for that. I saw Dr Cummins again and we arranged an appointment on Wednesday to follow up my scans. I told him I was interested to know the effect that the chemo I had tolerated had had on the tumour and what the future was likely to be. He thinks I'll be starting a new round of chemo fairly soon.

So, I was going home. I told the staff nurse looking after me that I really needed everything so I could be ready to go home by 4pm as my husband had an important meeting that evening at 6pm. She said that his would be fine. Of course it wasn't and you wait around and wait around. I understand that they need to get drugs from pharmacy, but honestly when you live an hour from the hospital you can't just ring someone once you have your papers. 

But eventually everything arrived (4:30) and I was out of there. 

I have spent the last two days readjusting to being out. I am now in control of my own pain relief which is a blessing and can take it when I need it. It is a big shock coming out of hospital and you need to time to reassimilate into family life. I am still ill, but coming close to getting some answers I hope.

Living with cancer

Living with cancer is much more than just going to weekly, fortnightly or other frequency chemo appointments.

There is all the side effects and problems that tumours, especially ones that cannot be operated on cause.

Consider this, since December 23rd I have been admitted to hospital 4 times (3 of those via ambulance).

The latest admission rounded of a lovely evening of drinking tea and teaching some of the people who made my very special quilt how to knit.

Here's how it happened.

I ate a biscuit (never again), got up to go to the loo, and face planted into Emma's under stairs shoe rack, unconscious. I imagine panic ensued. You don't expect your friend, even if she is suffering cancer to faint when she has seemed fine all night. I also have several small cuts to my chin and lip to show for the ordeal.

An ambulance was called, but Emma lives on a new estate so someone had to chase the ambulance up the road, while the lovely Jennie had been woken and came to provide some medical reassurance. 

Luckily for Emma I managed to contain the nausea I was feeling for the ambulance and I'm glad I did. 2 and a half bowls of blood later and I was worried. Blood remains in your body, vomiting blood is never a good sign. 

I was then hooked up to enough painkillers to fell a small elephant (entenox and my favourite liquid paracetamol) and took another trip to A&E.

A&E was pretty uneventful, until the vomiting started again, Tony arrived and was greeted with the sight of his wife being rushed into resuscitation while vomiting blood. 

They gave me some anti sickness drugs, one of which gave me an awful rash up my arm and so now needs to be added to the list of allergens (along with penicillin & liquid tramadol). They also took a chest X-ray and then Tony was allowed to see me. I can only imagine what had been through his head and I apologise with all my heart to you my love. I do not ever mean to scare you and I am sorry about that.

I was moved to the Acute Medical Unit where I am now and 48 hours later have not vomited anymore blood, but am still suffering from Melena (Google it if you wish).

I have had a CT scan and another endoscopy (camera down the throat), but came round from the endoscopy to the most beautiful thing in the world, back on the ward with my husband and children just arriving. 

This uncertainty about whether I will collapse, when I will collapse and what happens dogs every step of my life & panics me everyday, thanks to those closest to me, my amazing friends who so far this week have looked after my children so Tony can go to work and continue to earn, rather than taking the time off either unpaid or cutting into our precious holiday time together as a family.

Finally, after reading this please do one of two things

Visit www.blood.co.uk and register to give blood 

Or my very good friend Emma Patterson is completing dryathlon for cancer research uk, please sponsor her and make my dreams of an artificial stomach come even closer.

Dinosaurs suffered with cancer and a cure will not be found in my lifetime, but other research can help patients suffering from cancer, and giving up alcohol is a massive sacrifice to raise money.

The aging process

Tomorrow will be the 34th anniversary of my birth. Yep, with crappy timing my birthday has rolled around again.

Last years day was pretty awesome. We took the children and 10 week old bump to Disneyland Paris to meet Mickey Mouse and generally have fun and experience something new. This included quite a lot of train spotting, luckily our accommodation was close to a railway line and learning lots of new words especially Pomme for Apple.

The year before, 2011, I'd been diagnosed with the cancer and had my date for chemo starting which was 2 days after my birthday. So my actual birthday was spent with some friends enjoying the last of the sunshine before 2 days of PICC lines and oxaliplatin infusions. 

This year I fear will be another wash out. 

I had my endoscopy on Friday 27th, actually I kind of had 2. I opted initially to not be sedated and have the local anaesthetic. I thought I coped remarkably well with the tube being put in and did not have to much gagging or choking. However when it came to it I just could not tolerate it for too long, so the tube had to be withdrawn and I had to be cannulated and sedated. 

It turns out that there was still a lot of fluid in my stomach despite not eating or drinking anything for more than the prescribed time. 

I have to say the local anaesthetic is nasty, it is supposed to taste like banana. If that was my first taste of banana, I'd never have it again. It burns and tastes most unpleasant, but it does numb your throat and makes you dribble everywhere!

After a short time in recovery we saw the consultant. Finally I was going to get some answers.  Or not. 

There is an area of inflammation in my stomach, which he has sampled and sent off for histology. In order to investigate further I will need yet another CT scan. 

Since the endoscopy I have been in almost constant abdominal and back pain. Now I know that there is inflammation in my stomach I can't take anymore NSAIDS, so ibuprofen is out for pain relief and I am relying on trusty paracetamol and constipating cocodamol.

The last few nights have been so bad I have managed about 3 hours sleep a night. 

So, with all this behind and in front of me, I am not looking forward to tomorrow as a special day, but as one more day towards answers. 

Moving forwards

Earlier this week following my disappointing colonoscopy, I managed to get one of those rare things, A same day GP appointment. I don't quite know how I managed it? I wasn't on the phone constantly pressing redial at 8am when the lines opened, instead I called about 9.10, when we got back from dropping Isaac at school and was able to get an appointment for later that morning.

Please don't hate me.

Why did I feel the need to go back to the GP? Well, I weighed myself again & was shocked to say the least, ready for it??

58.4kg, that's under 9.5stone, that definitely makes me underweight. It means I've lost about a stone in the last 6 weeks. This shouldn't have happened, I've been eating better - jacket potatoes, salad, soup, chilli, tuna and lots of fruit - plums, apples, pears, melon, grapes, bananas.

When I walked into the GP's room he took one look at me and made me stand on the scales. Finally someone agreed with me.

'There is definitely a problem he said.

We talked some more about my bowel issues, the clear colonoscopy, the referral for an endoscopy.

He agrees with me that my body is not processing something. He kept mentioning malabsorption issues. I bought up the coeliac connection and he has agreed to test for it, alongside a plethora of other blood tests and stool samples.

So, my endoscopy letter came today, it's on Friday. Not sure whether to go for the local anaesthetic or the sedation again? I am inclined to go for sedation given the discomfort I experienced when having an NG tube inserted almost 2 years ago. 

Blood tests are also on Friday, it does take a couple of weeks for results, but hopefully we are moving towards some answers.

July 13th - The Colonoscopy

I spent most of Tuesday night up and down like a yo yo, and consequently was not too bothered about the noise on the ward and the new additions.


The day started as normal with 'obs', which consist of blood pressure, O2 SATS, temp and pulse measurements & then later on 'meds' obviously medication.


I kept asking what time the colonoscopy was scheduled for but just kept getting told that it was this morning. Now this is pretty frustrating as if I had been an outpatient I wouldn't have been expected to just turn up when the department opened at 9am and waited. 


Eventually the call came and rather than a porter this time I was escorted down to the department by a lovely healthcare assistant and the ward sister. This was after I had changed into a lovely hospital gown. 


The only time I have worn a hospital gown was when I gave birth to Isaac and then you put it on back to front to enable easy access for breastfeeding, skin to skin and all the other things that are important when having a baby. 


I put the gown on, they are rather tight around the neck, snuggled into the bed to protect my modesty and sat back to enjoy the ride. Yep, that's right I loved this part of being in hospital. I never had to get out of bed and I loved it, it meant you could sleep anywhere and had all the people wondering what was wrong with you. 


So we headed down to the endoscopy department and navigated all the corridors and doors and lifts and headed into a cubicle where I had to look over all the paperwork. Finally one of the healthcare professionals came in to discuss the procedure with me. At this point I explained my bad experiences with concious sedation and they were quite sympathetic and offered me a local anaesthetic instead, I was very greatful for this although I think this did lead to more discomfort.


I shall stop there and not tell you about the procedure. If you want to know about colonoscopy's google it!!


Once they had finished they let me know that they had removed a small Polyp and sampled a larger one which was causing an obstruction.


I was taken back to the ward, although by whom I can't quite remember.


I definitely had quite a long sleep after lunch, although what I ate is slightly hazy!!


Shortly after I woke up I had my visit from the kids, Tony and as an extra treat my mum. She had come over from Somerset to help look after the kids as the consultant had been very determined that I wasn't to go home until I had some help to look after them as I wouldn't be able to look after them fully due to the nature of the problem.


While they were all there, the staff nurse came round and said that the doctor was there to see me and did mum want to take the kids off for a few minutes.


This was when the bombshell broke. 


There was no easy way to say it. I remember reaching for Tonys hand and and holding it and squeezing it while he said (& I can remember exactly)


'its not good news, we've found a tumor obstructing your bowel and taken biopsies to determine whether it is cancerous or benign'


My world fell apart. I am 31 years old and am being told that I potentially have bowel cancer.


They explained that the next step was to wait for the results to come back and then they would be discussed in the meeting amongst the consultants, surgeons and associated personnel on the following Tuesday and I would have an appointment the following Wednesday to determine what the follow up treatment would be.


They left then and the staff nurse came back in and asked if we needed anything. We asked her to go and find mum and the kids so that we could tell them the news. 


How do you explain to a three year old that mummy has a potentially cancerous tumor?


When they came in we got them to sit on the bed and explained that the Dr's had found something in mummys tummy and that they had taken lots of pictures to find out what it was but that it would take some time to look at all the pictures and find out what it was.


Then the best news of all. I could go home. They gave me tramadol (a nice strong pain killer) and told me that I would have to call on Monday to find out when my appointment was on Wednesday. If I had any problems in the meantime it would be worth calling the hospital as well.


And then I was home and had to start telling people.

I called all my family and explained what I had been told.


There was a tumor in my bowel that was obstructing it. Biopsies had been taken and the results would be back in a week. It was probably going to require surgery to remove it.


That was it. I was home. 

What a week - THE BOMBSHELL - Part 4 - Monday 11th July & Tuesday 12th July

As this is now so far behind I have to put some dates on this so that you know when I am writing about.


Monday started the same as every other morning in hospital, ie someone trying to take my blood pressure at about 6am. I think I may have told them to 'leave me alone as it was obvious I wasn't dead'.


We were still no closer to figuring out what was wrong and eventually the entourage came about and told me what was happening.


There was an area of inflammation on my bowel in and in order to find out what it was they wanted to do a colonoscopy and get some samples for a biopsy.


I thought that meant I would get a bit of a break then until a porter showed up for me. It appeared that after all the fighting that had happened over the weekend I was going for another CT scan, this time of my chest. 


This was good news for me but there was a woman on the ward who had been bleating since her admission on Saturday about going for a CT scan of her lungs. The look she shot me was unbelievable!!


Once I got back I finally got a hot meal. I can honestly say that the Shepherds Pie had never tasted so good, even if it was only luke warm and a little bit 'crusty'


Tony and the kids came in later on again and we had lots of fun playing on the bed and colouring in. At one point I overheard one of the women complaining about Isaac's thumb sucking, and wondered whether she would have the guts to say anything to me about it. 


More sandwiches for tea and then more visitors. 


I then decided to have a look at the booklet and information about the colonoscopy that one of the staff nurses had given me earlier on. I started to worry at this point. Specifically about the sedation that they use to do the prodecure. They use a type of anaesthetic called concious sedation. I had had this before when I had a wisdom tooth removed and did not like it at all. The only way I can describe it is like loosing parts of your memory. Crucially 'parts' of your memory. You can remember some things then you have a gap and that was what I didn't like. 


And so to sleep.


Tuesday was pretty boring. You can only have clear fluids before a colonoscopy. However it is not nil by mouth. You can have black tea and coffee (bonus, I only drink black tea and coffee), clear soup - I think this means that they take the normal soup and sieve all the bits out because it definitely tasted of something, and best of all JELLY!! Thanks to all my Facebook and twitter friends I also had a lot of forbidden suggestions as well - Gin, Vodka etc.
You also have to 'clear out' the less said about that the better, after all this is a public blog and things cannot be deleted from the internet!!


I had my visit again and this time actually left the ward to walk Tony and the kids back to the exit. When I got back to the ward the 'windy geriatric' asked to have a word with me. She accused me of being a negligent mother for allowing Isaac to suck his thumb and Imogen to suck her fingers. According to her it was unhygenic, not nice to be done in public. When I politely told her it was none of her business she told me that it was her business when I was 'neglecting' my children's health. I reiterated that it was none of her business and she kept shouting that it was. Eventually one of the health care assistants had to come and tell her to calm down and leave me alone.


That definitely made me more determined that I was going home tomorrow whatever the outcome of the colonoscopy. 


They say lots of things about KARMA and I like to think that was what happened about 9pm when the 'windy geriatric' was moved from the ward to the 'discharge lounge' because she was able to go home. 


I didn't get much sleep on Tuesday night - partly due to nerves about the colonoscopy and for other reasons that are best not discussed here.