UHL-tr3

Caring at its best or not? 'Caring at its best' is the Univetsity Hospitals of Leicester NHS Trust 'tag line'. It is one of the 'Values' and purpose.

My experience of the LRI Day Ward, Floor 2, Balmoral Building, unfortunately really did not demonstrate 'CARING AT ITs BEST'.

When you are ill, when you are lying there in a hospital bed, when you are willing that the next person to walk onto the Ward has a gun to shoot you. You are arguably feeling pretty low. You begin to feel HELPLESS and HOPELESS! And then you start to feel worthless and a burden and the cycle of negativity begins and continues, and continues to grow.

This is when the amazing Nursing Staff that I have had the privilege to be cared by make a HUGE difference. A kind word and some reassurance from both the Staff Nurses and the Health Care Assistants, makes all the difference in the world. The Nursing care therefore that I had previously experienced on Ward 25 (see previous BLOG) and Ward 14 (Bay4) (See previous BLOG) had set my expectations of the standard of care at an ambitiously high level as the care had been of the absolute highest standard.

However, on the Day Ward I was made to feel that I was not really a priority, that I was an inconvenience; that I was somehow not ill, but was 'attention seeking' or 'making it up'. The Staff Nurse on the Day Ward demonstrated a real lack of understanding of what it feels like to be a patient, of how a patient might feel. There was absolutely no empathy. No comprehension of how scared or lonely a patient may feel. That they couldn't find anything wrong, not because there wasn't anything wrong, but because they couldn't FIND anything wrong.  In dealing with me the Staff Nurse made me feel like an unwelcome distraction from other things that needed doing. This made me feel even more wretched than I was already feeling.

The Staff Nurse really demonstrated what can only be described as rather an appalling attitude.

The Nursing and Care Staff I had previously encountered had been of such a high professional standard that they really were a credit to the LRI, UHL-tr, and the NHS. Therefore when I experienced Nursing Care that was 'somewhat lacking' shall we say, in comparison the stark contrast felt more wholly apparent. The Staff that I had previous encountered demonstrated Nursing as a 'VOCATION' rather than as a 'JOB'.  They took a holistic approach to my care; both my physical and mental well-being was considered and they advocated and demonstrated Person-centred care.

However the care on the Day Ward was arguably a 'LACK OF CARING'. 'CARING AT ITs WORST'.  Measure A of the 'Principles of Nursing Practice' states that, "Nurses and nursing staff treat everyone in their care with dignity and humanity - they understand their individual needs, show compassion and sensitivity, and provide care in a way that respects all people equally."  I do not believe that these principles were adhered to.

I was a patient, in hospital, and I felt ill. I didn't know what was wrong with me, the Doctors didn't know what was wrong with me. I was alone and scared in a hospital bed in my JimJams and I felt utterly and wholly vulnerable, scared and alone. All I knew is that I felt more terrible, more wretched than I had ever done in my life.

As I said earlier, as a patient laying in a hospital bed I felt HELPLESS and I felt HOPELESS. And that really is one of the worst feelings imaginable. The Staff Nurse on the Day Ward rather than helping to alleviate these fears with a smile, a kind word or the touch of a hand, she made me feel WORTHLESS which only added to the terrible spiral of negativity. The terrible spiral of negativity; fuelled by fear, a spiral that it is so easy for the patient to become embroiled in.

The Staff Nurse in question may have been having a 'Bad Day' may had received bad news in her private life that was completely devastating.  May herself have been feeling under the weather. She is only human. She may have been hung-over; I understand that, and it is unfair of me to judge. But, the way that I was made to feel was unacceptable, it really was wholly inappropriate; and tarnishes the perception of the whole LRI, UHL-tr and NHS, and I hate to think of other people experiencing the same LACK of Care at a time when arguably they need it the most.

The attitude of this one person tarnishes the amazing work and the hard work of her colleges and fellow Nurses of the LRI, UHL-tr and NHS.  And, I really don't believe that she embraced the 6 C's of Nursing:

Care - although she cared for me as part of her job, she didn't take care of me holistically, and certainly didn't go above or beyond in any means imaginable;

Compassion - she showed little or no compassion towards me, or towards how I was feeling;

Commitment - she wasn't committed to making me feel that I wasn't a burden, or making me feel that I wasn't a worthless, which was how I was feeling;

Communication - she failed to communicate with me in a way that put me at ease about my worries, and she failed to reassure;

Competence - although technically efficient, she showed a lack of understanding about my health needs simply by not understanding what was wrong with me. This is not necessarily her fault that she didn't know what was wrong as me, as I was undiagnosed and no one seems to know what was wrong with me, but 'no diagnosis' doesn't automatically mean there is 'nothing wrong', it just means they 'don't know' what is wrong;

Courage - this was not evidently shown as she did not demonstrate personal strength or vision.

I am very mindful that the Nursing and Care staff that had been responsible for my care had been of the absolute highest standard, and that the negative actions of one individual should not be allowed to overshadow that, and that my expectations of the LRI, UHL-tr and the NHS should remain at an ambitiously high level.

REVIEW OFTHE YEAR: 2014

Well ... that is 2014 all but done and dusted ... a whole year of BLOGGING ... 52 BLOGs written and completed and posted ...

It is fair to say that 2014 has not been as easy year; not at all, not by a long chalk ... it has been awful, really awful ... it has been a bitch ... but I am still here, perhaps not where I'd hoped to be or even where I'd like to be, but I'm here.  So I might as well look at some highlights ... of which there are surprisingly quite a few ... 2014 might not have been great, but there have been some great moments involving great friends most, if not all, involve Friends, Coffee, Horses, Hounds, my Cat and Benedict CUMBERBATCH ... and of course Papa ...

In no particular order ... :

A lovely generous surprise gift, 'just because' a beautiful bracelet 'a little strength':

A Puppy for Brian ... he called him 'Blu':

Horses: 'Benson', 'Freya' and 'George':

Hounds: 'Sonic', 'Stanley' and 'Bella':

My Cat: 'Albion':

'Be Bold In Blue', raising funds and raising awareness of MS with the girls:

Coffee:

Benedict CUMBERBATCH:

Papa:

UHL-tr

I found myself admitted to the Leicester Royal Infirmary (LRI) last week.  The LRI is part of the University Hospitals of Leicester NHS Trust (UHL-tr).  I was in pain.  I really was in a lot of pain. I have previously BLOGGED about Pain (see previous PAIN BLOG).  I was in so much pain I wasn't eating and drinking and was becoming really rather dehydrated as a result.

To be in pain is awful.  It is wretched.  It is hateful; excruciating and all-consuming. It is fair to say that it is terribly unpleasant.  It hurts.  It just fucking hurts; it hurts every-fucking-where.  I was in pain and I was dehydrated.  I was dehydrated because I hadn't drunk enough to take my pain medication; I hadn't drunk enough because I was in pain.  It is a vicious circle.  It is a vicious circle that needs to be controlled.  A vicious circle that needs to be stopped, that has to be broken, and for me the best way to achieve this and to break the cycle is the stop the pain.

The MS Trust quote reports that it is suggested that "up to 80% of people with MS experience pain at some stage."  So, after some too-ing and fro-ing and lost notes and juggling of beds and hanging around and taking blood samples they decided that they were keeping me in and I was being sent from the 'Acute Medical Unit' in the Balmoral Building, where I had initially been assessed, to Ward24 in the Windsor Building.  Ward24 is largely but not exclusively a Neurological Medical Ward.  On Ward24 I was treated with both care and respect and dignity and compassion and empathy by the various nurses and healthcare assistants and hospital personnel.

University Hospitals of Leicester NHS Trust promote its value which is to practice 'caring at its best'; and while my visit wasn't faultless and there were a couple of minor issues regarding clear communication and management of patient expectations; the standard of care I received was impeccable, and while I don't like to name names as inevitably you forget someone and have to later go back and include them; it really would be churlish of me not to lavish at least a little praise firstly and fore mostly upon Carol WARD and Liz GALVIN; but also upon Sophia PATEL and Dawn WILLIAMS who all went above and beyond to ensure that my stay was absolutely as comfortable as possible. And I must say Thank You to Ann TOVEY with whom I shared a room and who was very good natured and friendly, who didn't snore and who lent me her shampoo.

NHS England drafted a Vision and Strategy in December 2012.  'Compassion in Practice: Nursing, Midwifery and Care Staff - Our Vision and Strategy'.  This Vision and Strategy recognises that "To be a nurse, a midwife or member of care staff is an extraordinary role."  Which it certainly is.  It also stated that "Our draft vision was underpinned by six fundamental values: care, compassion, competence,communication, courage and commitment."  The Nurses and Auxiliaries and Care Staff on Ward24 demonstrated all six of these fundamental values, and are indeed a credit to Ward24, to LRI, to UHL-tr, and to the NHS.

The staff ensured I was hydrated with water (Liz) and tea (Carol) - a very high priority and very much appreciated.  They explained all the buttons of how to operate the moving bed which kept me entertained for a while (Yes! I am easily amused) and a million little things that they did that made me feel that my care was a priority to them, and that nothing that I asked was too much trouble.  There are others, many others that I should thank, representatives from Occupational Therapy or Physiotherapy (I'm not sure which) who were incredibly helpful, but especially Kareena BASSAN the Physiotherapist who sorted me out a pair of matching crutches, which was marvellous and who spent the time assessing me with them and ensuring that I was able to use them with confidence.

I know people complain about Hospital Food, and complain about the quality of the food provided in hospitals. But I have to say I have always thought that it would be a logistical nightmare of a task to provide good quality nutritious food of a variety that caters for personal dietary needs and particular types of food like Kosha, Halal, Vegetarian, and Vegan to a whole hospital full of people on time.  To provide food that is nutritious, tasty and appetising; food of a suitable variety and choice to meet religious, cultural and/or dietary needs to a huge number of people at a specified time is no mean feat.  And at a cost too as there are strict budgetary considerations.  So, I am really rather reasonably impressed. The food that I had was OK, and I had a choice of fresh fruit.

 

The catering staff were always cheerful and friendly whilst being busy and engaged in the operation of the delivery of food choices, and I especially looked forward to Balvinder Kaur DHADER delivering my juice, tea, toast and a banana each morning for breakfast. Thank You.

In August 2014 new Hospital Food Rules were introduced which highlights the expectation for the hospital to provide a higher standard of food under the new measures announced by the Secretary of State for Health (Jeremy HUNT).  Although the 'Campaign for Better Hospital Food' said that the proposed changes were 'woefully inadequate'. TV Chef James Martin of 'Ready Steady Cook' and 'Saturday Kitchen' fame has embarked upon a mission to transform the standard of the nation's hospital food (Operation Hospital Food) with some positive results. As I said not an easily task to be the food provider, so I am very thankful for what I received.

And then, my tremendous thanks go to the Neurologists and Neurology Team, especially to Dr. Critchley who it is noted looked especially dapper in his Bow-Tie; who conducted his rounds with professionalism, understanding and good humour, which is amazing considering he has the unenviable task of trying to diagnose and find out what is wrong, when MS is widely known as the 'snowflake disease' i.e. no two are the same and it must be like trying to 'understand the understandable' and 'diagnose the un-diagnosable'. Good Job Dr. C.

So, my HUGE thanks to the wonderful staff of UHL-tr (NHS) of the LRI and of Ward24 for caring and looking after me.  Your efforts were very much appreciated.  I do hope that I don't see you again soon, but it is reassuring, incredibly reassuring to know that should I should be required to make a return to the LRI, to know that it is staffed by such lovely caring and hard-working staff who do a tremendous job to ensure that their patients are as comfortable as possible and are well looked after.

Thank You.  You do a great job, and you do make a difference, the world of difference, more than you know.

SILENCE MS

Yes!  I am going to Shut Up.  Well I am going to shut up for 48 hours at least (on 20-22 November, 2014).  Well, I am going to try.  I am going to try and shut-up, be quiet, stay silent.  I am not denying it is going to be rather a big challenge.  It is going to be a huge challenge. It is going to be a massive challenge.  Quite a big ask; as yes, I do rather like a chat.  I am rather a chatterer.  In fact, I don't really very often shut up.  But, I am going to give it a go.  I am up for the challenge.  Well-Done me.

MS is a silent and often isolating disease.  We at 'Shift.ms' and I say 'we' as I am delighted to be included as one of the team, as I run the 'BLOG Post of the Week' feature on the Shift.ms Social Media sites.  Shift.ms are hoping to 'break the silence' by staying silent in order to raise funds. Raise fund and raise awareness.

So, I am going to be silent for 48 hours for Shift.ms because MS Awareness needs a voice and needs to be heard.  And I can really think of no better reason than that.

You can find out more information at the following address: http://silence.ms/

At that address you can find out more and you can sign up to take part yourself.  Are you up for the challenge?

Thank You for your support.  Thank You for reading this.  Thank You for your sponsorship.  Thank You very much indeed.  It really is very much appreciated.  My Just Giving Page is at the following address:
https://www.justgiving.com/Hanya-Gordon

Thank You x

RIDE LONDON2

As you will by now know (see my previous RIDE LONDON BLOG) Patrick aka 'SHARKY' is taking part in Ride London in support of MS-UK; to raise funds for and raise awareness of Multiple Sclerosis.  'Cos that is the splendid sort of guy he is.

In case you missed it.  The inaugural Prudential Ride London-Surrey 100 took place in 2013.  The event starts in the Queen Elizabeth Olympic Park, and goes on for 100 miles through the closed streets of London and out on into the Surrey hills.  The event is alegacy of the 2012 Olympic Games and is now an annual two-day festival of cycling, developed by Boris JOHNSON, the Mayor of London and his agencies. It is billed as the 'ultimate cycling challenge'; so, definitely not for the faint hearted.  If you would like to find out more, details can be found on the website: http://www.ms-uk.org/RideLondon-Surrey100

This year 'Bike London' takes place over the weekend of Saturday 09 August and Sunday 10 August, 2014 Amanda and I will be going along to make lots of noise and cheer Patrick and the MS-UK team along, and to meet with the other members and supporters of the MS-UK team.  If you are in or around London or Surrey that weekend, do get in touch and I'll let you know and I'll let you know where we shall be.  You can come along and meet up with us.  It would be really great to see you.  The more the merrier.

Patrick aka SHARKY is a tri-athlete: Running.  Swimming.  Cycling.  An Iron-Man.  He does this sort of thing for fun! He is SUPER fit.  He looks good in LYCRA!  Yes, he really is that fit.  So, he is ready for the challenge.  Patrick enjoys a challenge (well yes, we know that, because he married Amanda!).   He has been training hard. He has been training really hard. And it is going to get harder.

Patrick has commented that he is taking part because "I made him do it".  This is only partially true.  I am Amanda's friend, and I have MS and, I admit, I suggested it.  But, it seemed like a legitimate way to get Patrick into Lycra! Have a mentioned that Patrick looks good in Lycra?  So, why is he doing this?  Patrick has explained that, "MS-UK is important to me.  I have seen the terrible effects of this debilitating disease and I want to do my part to help find new treatments and eventually a cure."

Patrick trains between four to five days a week, dependant on his work commitments.  He explains that at the moment he does about 6-8 hours a week.  This is his 'base' phase of training.  His training is built into 3 phases of 'base', 'build' and 'peak'.  He will build up to 14 hours as his training builds.

To me, the commitment that Patrick shows is incredible.  His determination and dedication is admirable.  It is impressive.  It is awesome.  To be honest, it is really humbling to think that someone would show such devotion to the cause, to train with such loyalty, focus and commitment, would push themselves to such an extent that they can compete against some of the best.

When I asked Patrick about his diet, he explained that while he is training his diet is fairly straight forward:

Breakfast - porridge with banana, honey and sprinkled with a home-made nut-and-seed-mix.

Mid morning snack - fruit or nuts

Lunch - pasta salad with chicken or egg

Afternoon snack - small flapjack

Evening meal - fish/chicken/steak with vegetable or salad.

Patrick roughly bases his diet on about 2400 calories per day, but will increase this on heavy training days.  When he is training he will burn 500 - 1000 calories in an hour depending on whether he is running or swimming or cycling.  He tries to work on a 500 calorie deficit each day, so he loses 1lb per week, which means he'll get to his ideal race weight.

Patrick is rather strict when he is training, and he recognises that Amanda is a huge help in supporting him and keeping him focussed.  However she does provide the additional incentive and occasional treat of chocolate and wine when it is needed.

Patrick has explained that he "loves the challenge of driving myself to the edge, and even better especially when I can do it for a great cause.   The reason I choose to help MSUK is I know how tired I can get from working a 50+ hour job and training on top but I know a good sleep and all is ok, but I know my wife's friend doesn't get that relief."

Please. Please. Please, if you can, do support Patrick is his fundraising efforts.

Patrick is raising funds for MS-UK and has set up a 'Just Giving' Sponsorship page at:http://www.justgiving.com/Patrick-Bowden2 

The text code to donate by text is PBRL77 £5 then text that to 70070

THANK YOU in advance for you support and your generosity

RADAR KEY

World Continence Week will always be held from Monday to Sunday in the last week of June.  Therefore World Continence Week this year will be heldon Monday 23rd - 29th June, 2014.

World Continence Week (WCW) is an annual initiative managed and run by the International Continence Society (ICS).  Its primary aim is to raise awareness of incontinence, and incontinence related issues.

The other week I received another invitation to attend the 'Continence Clinic' at Leicester General Hospital (LGH).  I have blogged about this before (see Continence BLOG) about my last visit.  I commented previously that "I always refer to it as the 'incontinence clinic' - but my GP always corrects me, as the correct and more positive terminology (we have to at least try to be positive about these things) is the 'Continence Clinic'."  I wasn't thrilled the first time that I went, and this time I had a better idea of what to expect; a better idea about the prospect of being prodded and poked in places you don't necessarily want to be prodded and poked, but they had kindly invited me, and so I went along.

The Doctor and Janet the Nurse were lovely, they are lovely.  Really lovely. Because actually; it is all terribly embarrassing.  Because actually; nobody want to talk in detail about their bodily functions.  Because actually; nobody wants to discuss either their bowels or their bladder.  A friend, a comrade with MS commented that, "Incontinence is perhaps one of the most humiliating MS symptoms".  But the staff at the Continence Clinic understand this, are sympathetic and understanding and helpful.  They also retain a sense of humour, which really is invaluable.

Later on that evening I received a message from a friend asking me if I'd had a good day.  I replied explaining where I'd spent my afternoon, and this eventually led to a discussion about a 'Radar Key'.

I was asked if I had a 'Radar Key'.  I hadn't.  I admit I'd never even heard of one.

What is it?  What is a Radar Key?

It sounds quite exciting, it sounds like it could be a Doctor Who Gadget like a Sonic Screwdriver.  It really isn't that exciting.  But, I found out that it is a large, silver-coloured key.  This large, silver-coloured key opens disabled toilets.  Of which there are more than 9,000 accessible toilets in the UK, and these can be opened like magic with a Radar Key.  (I rather suspect that a Sonic Screwdriver may be effective too, in opening disabled toilets if I had one of those).

This is the Radar National Key Scheme. The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with National Key Scheme (NKS) locks can now be found in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations in most parts of the country, therefore offering independent access to these toilets by using a special key which can be bought from the Disability Rights UK.The first Radar toilet opened in 1981. Since then, more than 400 local authorities and thousands of businesses have joined the scheme. Some 9,000 toilets are now listed as being accessible via the Radar key but the figure is probably much higher.

Official Radar keys cost about £5, including postage and packing. These can be bought from participating local authorities or the Disability Rights UK shop.  Although some councils give them away for free.  And there are lots of imitations and copies available on the internet.

https://crm.disabilityrightsuk.org/radar-nks-key

It is called the RADAR scheme because Disability Rights UK was previously called theRoyal Association for DisAbility Rights.  The thinking behind the radar national key scheme was that People who need to use a locked disabled loo can now go in peace, and quickly, without the indignity of asking someone if they can 'go', please and they shouldn't have to wait and should access a clean facility.

The truth is a lot of people with MS do have issues at some time with either their bowel or their bladder.  It is estimated that it affects around 50%-80% of people with MS.  For them it can either be a rush to get to a WC, or they can't go at all.  All of which is an inconvenience.  And requires a convenience.  Bladder and bowel problems occur commonly in MS, and can range from mild incontinence or constipation to more severe problems. Bladder problems include the need to pass water frequently and/or urgently, incomplete emptying or emptying at inappropriate times.  Bowel problems include constipation and, infrequently, loss of bowel control.

So faced with these difficulties it may be useful to have a Radar Key, if you haven't already readily got access to a Sonic Screwdriver.

BLUE

Each year the MS Trust and MS Trust supporters take part in 'Be Bold in Blue' for MS Awareness Week (28 April - 04 May, 2014).

 

This year the MS Trust is celebrating 21 years of providing advice and guidanceand has developed a list of 21 challenges (http://www.mstrust.org.uk/msawareness/21challenge.jsp) aimed at raising awareness of MS.

"To celebrate 21 years of providing free, positive practical information, in the run up to this year’s MS Awareness Week we’re running the MS Trust 21 Challenge: 21 ways in 21 days you can get involved and make a difference for everyone affected by MS." 

The MS Trust have a fantastic website for those diagnosed with MS or for those wanting further information with News, Advice, Publications, Research as well as Information for getting involved:http://www.mstrust.org.uk/

One of the MS Trust 21 Challenges was 'to organise a 'Be Bold In Blue' Dinner Party!'

The girls (my 'Book Group Girls') and I met up (see ICE-CREAM BLOG) and we thought that this was an absolutely splendid idea, to have a blue-themed dinner party.  We immediately brain-stormed the idea: BLUE Outfits.  BLUE Food.  BLUE Wine.  BLUE Movies.  Steady on girls!  However, it proved slightly more difficult than we'd envisaged to find a suitable date; but we did it, we couldn't find a date during MS Awareness Week, we are a bit late, but we are doing it.  We are doing it now.  Better late than never. Exactly.

We decided we wouldn't do a full Dinner Party, as that would involve cooking and coordinating dishes; and although we are a group of immensely competent women, more than capable of arranging a fabulous dinner party, the effort involved in finding a date had somewhat zapped us, had drained us of our usual legendary enthusiasm and so we decided on a 'Be Bold In Blue' Cheese and Wine Party. BLUE Cheese and BLUE Wine.   Great. We agreed we could do that.  Once we'd agreed the blue wine we'd be drinking wouldn't be BLUE NUN the real organisation started, and with our usual level of motivation and passion and fervor and gusto.

The lovely Fund Raising Team at the MS Trust kindly sent us some MS Trust Balloons and Flags and stickers and a collection box to collect the money we raised.

And then we found a variety of Blue things.  Blue Plates. Blue Napkins. Blue Spectacles.  Blue Wine Glasses.  Blue Nail Varnish. Blue Outfits. 

We were having so much fun that we were joined by the younger family members, who also enthusiastically embraced the blue theme and then we ended up watching (and singing along to) the DVD of 'Frozen'.

I know that I am lucky. I know that I am very lucky. I have amazing friends. I have absolutely amazing friends who recognise the difficulties that I experience because of my MS and they accept them.  They unequivocally accept them. They know that I struggle, that I am very self-conscious about various aspects of the condition and they make allowances and exceptions; so that I no longer feel awkward, embarrassed or ashamed in the things that I now struggle to do.

During the evening in raising awareness and raising funds for the MS Trust it felt that we were celebrating the 'battle' that those of us with MS are fighting, and we were highlighting the fact that it is an on-going fight that we won't give up until we have won.  It felt as though we were indeed MS Warriors.  We were enjoying ourselves. We were having a laugh.  We were laughing in the face of MS.  This was quite humbling, but hugely reassuring to know that I have such tremendous support from my friends.

I can happily report that we had a simply splendid night; it was great fun, it was awesome and I think we definitely proved that there is a lot of truth in the statement that 'laughter is the best medicine'. 

There were certainly lots of Laughs. Balloons.  Glasses. Spectacles.  An auction.  BLUE Cheese. Crisps and Crackers.  We charged our BLUE glasses with BLUE Cocktails, and we raised them; we also raised awareness, and we raised money.  In all we raised £30 and we had a great time.  I think that is evidence of a very successful evening.

You can donate to the MS Trust:

http://www.mstrust.org.uk/donate-online/

Or have a look at their website for other ideas of how you can raises funds and awareness, and how you can have great fun doing so:

http://www.mstrust.org.uk/fundraising/

We have already got ideas and are making plans for future events; and have lots of ideas for themes.  We're already identified as date, so there is already something to look forward to, and something I shall be blogging about at a future date.  Thank You Elise, Vicki, Donna and Lynsay for being so strong, thoughtful, generous, kind and funny; and for being just generally amazing friends.