A Brilliant Patient Experience

Earlier this year I decided, after a couple of poor experiences, to change where I received the care for my Myeloma. When I was originally diagnosed in 2011 I originally received my monitoring and care at Wigan via their general haematology services but quickly realised I wanted (and needed) something a bit more specialist so I transferred to Manchester Royal Infirmary (MRI). Travelling to Manchester and hanging round for most of the day in a specialist Myeloma clinic was a fairly draining experience but I considered it to be worth it as I was happy I was receiving the best care.

However time and progress moves on and during this time The Christie, the world famous cancer specialist hospital in Manchester, opened a specialist Chemotherapy centre attached to Wigan RAEI. The project was jointly funded by The Christie, Wigan and Macmillan and is designed to deliver chemotherapy and anti-cancer treatments for patients in the Wigan area.

The new centre got rave reviews from friend and colleague Mel Cochrane, who sadly lost her battle with cancer earlier this year. Her seal of approval came at the same time I had a couple of poor experiences at MRI with failed bookings and missing notes etc. but more importantly it seemed like nobody cared and therefore I asked for my care to be transferred back to Wigan in the hope I would receive a better patient experience at a more local centre. I was not disappointed.

 

Firstly the building is new and so creates a good impression. Reception resembles a hotel rather than a hospital as does the waiting area. The glass gives it an light, airy and welcoming feel.

Staff are keen to make you feel welcome and put you at ease.

The out-patient ward has 4 beds and around 8 treatment chairs. A chair for yourself and 1 for any visitor. A MacMillan volunteer ensures you are kept replenished with free coffee, tea or water and sandwiches at lunchtime.

There's a marked difference on how they administer my treatment too. Zoledronic Acid or Zometa to give it its trade name, is administered intravenously. The cannula is put in the back of my hand rather than my arm - this is to spot any allergic reaction sooner (the skin on the back of your hand is much thinner). A bag of saline is given first to ensure you are hydrated, then the saline with Zometa infused, then finally another saline bag that acts as a flush. I've noticed that the side effects I used to encounter at MRI are not as severe and I figure its connected with the hydration angle. I therefore ensure I drink plenty before and after to help this along.

There's some really nice touches too - there are 8 reserved car spaces for patients of the centre and I have been given a car park pass which allows me to park free - however its so local to me, a 10 minute walk, that I've not used these yet but its good to know other patients and their visitors get this benefit too.

There aren't many benefits to having cancer to be fair and there is impact both physically and mentally. The Christie at Wigan and MacMillan have looked to try and mitigate many of the issues within their control and so for this hats off to them.

In the age of customer experiences I think The Christie and MacMillan have got it just right. I feel that the care they deliver is patient centred and of high quality with a real human touch.

Don't get me wrong I wish I didn't have to go but as long as I do I hope I continue to receive my care at The Christie at Wigan - a brilliant patient experience.

Chasing "The Standard" - from Whelley to Elton Vale

Regular readers of this blog will know that I'm passionate about grassroots football. I think it's a brilliant vehicle for teaching youngsters about being better citizens, learning to respect elders and peers; learning about individual responsibility and being part of a team as well as how to win and more importantly how to lose. If the odd player goes onto bigger and better things then great but first and foremost it should be about fun and enjoyment.

My club, Whelley Alexandra, is lucky to be part of the Bolton, Bury and District Football League. The league promotes a respect, fun and enjoyment culture across countless playing fields every Saturday morning, and bar the odd numpty, most clubs and teams "get it". They understand that results aren't that important and that it is simply kids football, not the last 4 of the Champions League, but simply a group of kids having fun, playing football with their mates.

I like many others, fell into grassroots football as a dad that started helping out. That 7 year old that I first started taking to Saturday morning football is now a 16 year old, still playing for Whelley Alexandra I might add. I don't coach him anymore but his younger brothers, now under 11s. I am also secretary of the club and very proud of, and full of admiration for, the volunteers that facilitate 165 youngsters playing football each Saturday morning across our 10 teams.

Did I say 10 teams?

Oh I'm sorry its only 9 teams now!

Unfortunately, and with very heavy hearts, Alan Blazys (Chairman) and I took the decision to fold one of our u16s teams this week. The manager informed us that "he felt he had taken the team as far as he could" and that several of the players were not up to "the standard". Several of the players have lost interest and have discovered things that most 16 year old lads discover, I know I did, and don't want to continue. As a result there are simply not enough players to field a team, we would struggle to field a 5-a-side squad, and so the decision had to be taken to fold the team and withdraw it from the league.

The team has played in the highest division of the BBDFL for years and recently saw Tinashe Chakwana sign a 2 year scholarship  with Burnley FC. So the players that have played for the team for a while are decent players. Surely up to "the Standard"

So what exactly is "the standard"? I've looked through the BBDFL handbook and there doesn't appear to be a definition. I've also searched the FA regulations, nothing there either. So I have asked a few trusted coaching friends who have enlightened me. The standard is a phrase that coaches and managers use when they think a player isn't good enough. Ahhh now we have it. So if the players in your charge aren't up to the standard surely that reflects on your abilities as a coach?

If the players enjoyed Saturdays mornings instead of worrying about results then surely "the standard" becomes irrelevant. It would have been interesting to see if the manager would have quit had the team won their Lancashire Cup 1/4 final at Elton Vale on Sunday instead of losing 6-0?

The abiding memory many of the players from that team will have of Whelley Alexandra is not the years of fun and enjoyment they have had; nor the many friends they have made; the trips and parties we have had but it will be one of losing a 1/4 final and the manager walking away with 4 or 5 players which resulted in the team folding. That is the sad part.

In terms of "the standard" I think the only person that wasn't up to "the standard" was the manager we chose to run that team. The fault therefore lies with the Chairman and I. We must make sure our future managers / coaches are the right people and fully understand what we as a club are all about.

Saturday mornings, football and fun.

Our other under 16s team by the way plays in the bottom division, has 18 players signed on and a waiting list for players wanting to join. They're not the best team, but they don't half enjoy their Saturday mornings together. Credit for that must go down to the manager/coach and the players of course who don't take themselves too seriously.

If you were to ask them what "the Standard" was I bet half of them would describe a pub near to where Bolton County play!!!!

Food Banks and Football

I'm not a religious person. In fact I struggle to believe in God or any supreme being. So I read the Archbishop of Canterbury's recent article of food banks with interest (I hasten to add I read it on the BBC website and not in the Mail on Sunday!!!)  http://www.bbc.co.uk/news/uk-30366020


Sadly food banks are now an accepted part of our society, even here in Wigan, when 5 years ago they were unheard of. The people that access them aren't your stereotypical soup kitchen diners either. There are a lot of working people who simply don't have enough money to buy food once they've paid for rent, mortgages, fuel (gas, electricity, water and petrol). The story in the article highlighted the family that had to access the food bank because they needed 2 new tyres for the car so they could continue to get to work. This struck a particular chord with me.


I shelled out £130 on Tuesday for 2 new tyres for my car, 2 weeks before Christmas when your kids want the latest gadgets, clothes etc isn't a great time for that to happen. I'm lucky though that I'm not alternating food with Jen just to feed the kids. Don't get me wrong the kids wont be getting Xbox Ones each as neatly requested on their Christmas lists, but they'll do well and they're very lucky. Luckier than they'll ever appreciate.




This week my colleagues and I are trying to break the Guinness World Record for the biggest food hamper in the world. We are having Christmas jumper day and, in exchange for wearing your Christmas jumper to work, you need to bring in some food for the food hamper. The hamper will then be divided between the food banks in Leigh and Wigan in preparation for the busy time of Christmas.


The Wigan food bank is run by local charity The Brick http://thebrick.org.uk/ As well as provide support to Rough Sleepers they have a fantastic resource centre where the folk they are supporting get the opportunities to get some work experience and learn some key skills as part of their wider rehabilitation. The Resource Centre refurbishes furniture, bikes, computers and much more, and then sells them at discounted rates. The funds are then recycled into the project allowing growth.




Many rough sleepers are not there by choice. Many have made some poor life choices or had some bad luck and its the fabulous work of charities like The Brick that provide hope to some of societies most disengaged people.




I was delighted to see that the Latics fans considering boycotting the Boxing Day fixture at Elland Road due to ticket prices are encouraging fellow boycotees to donate their ticket money to The Brick  http://thisnorthernsoul.co.uk/2014/12/an-open-letter/ I was equally appalled that Leeds Utd were even asking £41 for an adult ticket, at Christmas, or any other time of year for that matter. To ask that sort of money for a second tier English football fixture between 2 sides realistically looking at avoiding relegation and achieving mid-table mediocrity is nothing short of disgraceful. Particularly given what I have discussed earlier in this piece.




Latics have had some bad press recently and Latics fans are often much maligned. However the lads I know are really decent and this shows that they care and understand where football fits in to wider society and, unlike some of their bigger neighbours, it isn't the be all and end all. The people that will be supported as a result of their kind donations might well have been Latics fans had their journeys not headed off down different paths.




Lets hope Christmas 2014 is the turning point for everyone. Lets hope the Brick goes from strength to strength in their support and rehabilitation of rough sleepers in Wigan. Lets hope our food banks go out of business because they are not needed any longer. Lets hope Latics smash 5 past Leeds and go on a run that sees them make the play offs and win promotion via another trip to Wembley.


Most of all I hope you have a very happy holiday.


Much love xx

Frank Turner & The Lesions of Doom......

Been an eventful week...

Sunday saw a very rare family outing to watch Frank Turner at the Manchetser Arena. It was Alex & Callums first ever gig and they participated with full gusto, singing every word, jumping and clapping at every opportunity. Despite Franks back problems it was a tremendous gig and would rank in the top 5 of my all time favourites. I hope to see him again in the future although that may well depend on my health more than his.

On Friday, Valentines Day, it was my monthly visit to Manchester Royal Infirmary. Not the most romantic of days for Jen, but my favourite day of the month as it's the only time Jen and I get together. We don't get to go out at night and there always seems to be someone shouting "Mum!" or "Dad!" fights to referee, or, tears to wipe.

Friday was important as we received the results of the recent skeletal survey I had. As feared the recent X-rays show a couple of lesions on my skull, evidence that the Myeloma is attacking the bone from the outside. Together with my high para-protein levels and high light chain readings point to disease progression although we have agreed to hold off with chemotherapy until further progression. The first batch of chemo is the most successful and so we want it to be at a time it will be most effective.

It's been a tough week for us both and we half expected the news we got. It's been stressful to say the least, made more difficult by Jens illness, but friends who have sent good luck messages and that have been genuinely rooting for us have made it more bearable. We are really grateful. It's a shame that we don't get more support from closer to home, but that's the beauty of families I suppose!!!

We continue to be positive and whilst these lesions are a black cloud we are focusing on the silver lining that treatment can be delayed for the time being.

In the meantime download some Frank Turner - hopefully you will be as uplifted as we were last Sunday. In one of his songs, I knew Prufock before he got famous, there is a line that sums up where we are at the moment.

"They help us with remembering that the only thing that's left to do is live"

Reality bites

My colleague, boss and friend Vicky Bannister published a blog last year called "When carers go bad" it's brilliant and you can read it here http://vickyandclem.blogspot.co.uk/2013/03/when-carers-go-bad.html

I've recently encountered the same sort of thing. My Myeloma appears to be pointing towards the start of chemotherapy. My light chains are up significantly, I've got increased bone pain and my para-protein levels remain high. On top of that I have had repeat infections but more recently a chest infection that has knocked me for six.

So what do you do when you are battling all of this and your main carer, your rock, the person who maintains the equilibrium, the person who makes the house run, the person who also looks after her 82 year old mum falls ill. Well it all falls apart.

Jen has been really poorly. I don't remember her being quite so ill - even after emergency c-section which involved blood transfusions. The same chest infection has knocked her for 6, I would even say it was 7!!

So this week I've tried to, had to, do more to help. I've done a bit of cooking - was quite proud of my fish pie with potato and leek mash. Done some washing - didn't manage to run the colours, as well as do packed lunches, school runs and bits and bobs of shopping - we don't half go through milk - on top of not being A1 myself a having a trip to Manchester Royal for a scan.

It's made me realise how much Jen does and how she never stops, how running the house, looking after her mum, and me, and the kids, as well as working full time - eventually the tank becomes empty. It's also made me realise what good friends we have, friends who took time off work to pick Al & Cal up from school when I was in hospital and Jen unfit to drive.

It does make me worry about the future and how we will cope if Chemotherapy comes. But that's a worry for another day. The main thing now is to get Jen fit again. And I must help more to relieve the burden on her.

Next clinic is Friday 14/2 - Valentines Day. Update to follow.

Zometa Infusion? No thanks I prefer PG Tips

Its been a busy week since my appointment at MRI last Friday, hence my delay in posting this blog.

Overall the results remain good, my bloods remain as stable as can be expected which is good. As mentioned in previous blogs I suffer from bone pain in my hips and pelvis. That's why I fidget a lot when I'm sat down - Ive not got ants in my pants - honestly!!!

The specialist has decided that I need to start some treatment which as well as helping with bone regrowth will hopefully help with pain relief. The drug is a zoledronic acid with a trade name of Zometa. You can find out more about Zometa here When the specialist told me they would start this treatment he said "We will start you with some Zometa Infusions" I thought he was offering me a cup of herbal tea which I'm not keen on!!!!

I will have 15 minutes of intravenous infusions once a month at the same time as my monthly check up so that saves a second journey to MRI. First one is 8th March, the date of my next appointment and I'll let you know how I get on.

Great club or simply great teas

When you are a young cricketer just starting out in the world of senior cricket you judge another club by the quality of their cricket teas.

Each Saturday and Sunday ladies, some men do get involved to be fair, but generally ladies, make the cricket teas. Some are simple affairs done on a tight budget generally sandwiches, crisps, salads and fruit/cake. Some however are more extravagant including warm food such as curries or chillies, hot pot or pies, Lasagne or pasties, chips, baked potatoes, ice creams, yoghurts, trifles and fairy cakes.

You will often hear younger cricketers, when they find out where we are playing next week say "Oh I love/hate it there.The teas are fantastic/crap" delete appropriately!!

As you get older though you judge a club on much wider issues such as the culture of a club or the facilities.

The culture of a club is about how they play the game, how they treat the opposition, opportunities for young players to play first team cricket - quite simply do they play the game hard but fair and are they the type of club you would be happy to have a pint with in the bar after the game?

Facilities are a slightly different kettle of fish. There are many clubs who have a great culture but simply don't have the money to invest in their facilities. They therefore struggle to attract new players  or develop clear pathways from junior cricket into senior cricket.

Wigan Sports Club where I play cricket (quite badly I may add) and coordinate the junior section is one of those clubs. We have a great culture. This is largely down to the players but most credit should be given to club captain Mark Rowe. He has been instrumental in developing a fantastic culture at the club. Don't get me wrong when he leads the team out on a Saturday there is a steely determination in his eyes. His team play the game on the edge and play to win and on the odd occasion a player oversteps the mark, he instantly rectifies the situation and has a "quiet" word with the relevant player.

After each game the umpires score each team as to how they behave and how well the captain keeps control of his team. It's no coincidence that Rowie has received the top marks in this area, and Wigan have received the Spirit of Cricket award too, for the past 2 seasons.

We have though, struggled for years without investment in our facilities. The changing rooms and clubhouse badly need refurbishing. The cost to the club in utilities due to inefficient heating and lighting systems as well as essential maintenance costs each year is enormous. The cricket section badly need some new cricket nets and there are significant issues with drainage to the pitch too.

Now however we will begin to develop facilities to match our culture. Myself and Rowie set about applying for a grant from Sport England back in the autumn. We chose to submit a project to refurbish the changing rooms and the common areas in the clubhouse. If successful the work would benefit the whole club - Hockey and Squash as well as Cricket; would help attract new members and retain existing members.

The announcement today by the Sports & Tourism Minister of a maximum Inspired Facilities Grant of £50k is fantastic for the club.The club is match funding this to the tune of £31k meaning a £81k investment in changing room facilities at the club. We should be able to install energy efficient lighting, heating and hot water facilities - seeing a reduction in our utility bills. We should also see more attractive and functional changing rooms that require less maintenance too. We will also see new kitchen facilities so should see good cricket teas as well!!!
Not a bad effort for 2 blokes from Wigan - one a great cricketer, extremely intelligent, well educated man with thoroughly decent principles. Oh, and me!!

So hopefully over the next couple of years young and old cricketers of other clubs when they find out they are playing at Wigan the week after will say "Yes, they are a great club, great culture and great facilities. Oh and the teas aren't bad either!"