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.

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.

STEROID INFUSION

The other week I experienced my first intravenous (IV) Steroid Infusion.

It has never been absolutely clear whether my MS is Relapsing Remitting (RRMS) or more Progressive in nature (PPMS).  As my symptoms are fairly constant (Terrible Balance, Fatigue, Cognitive Dysfunction, Continence issues, and various Sensitivity problems) and these do not seem to fade away either partially or completely.

It was therefore questionable as to whether steroids would be a useful aid for me, to offer relief and to aid recovery.  But, having experienced what could possibly be a 'flare up' or an 'episode' or an 'exacerbations' or a 'relapse' recently, with a distinct worsening of symptoms, it was suggested that I have a three-day Steroid Infusion to see if this helped to ease or lesson my symptoms at all.  The general consensus of my MS Nurse, Neurologist and GP seemed to be that is was certainly worth a go.

So, I made an appointment to visit Ward1 at Leicester General Hospital on three consecutive days.

Firstly and most importantly, I have to say that the nurses and staff on Ward1 at Leicester General Hospital (LGH) could not have been nicer or lovelier or more splendid, and I really cannot stress that enough.  They really were absolutely tremendous.  I really cannot thank them enough. (Deanne, Keeley, Louise, Jane, Mariesa, Tracey, and Sue - sorry to the others whose names I didn't catch).

This was partly because the nurses treated me as someone with a genuine medical condition.  I am rather used to the 'You don't look sick' mentality of so many people, people who perhaps unintentionally, but nonetheless, seem to look at me and feel entitled question the fact that I am ill; question that I do have a disease, a condition, an illness.  That I am in constant pain. This lack of understanding is one of the worst aspects of living with an 'invisible illness' like MS.

And that is what it is, this is what it is, an 'Invisible Illness'.  But people are not comfortable with something that they can't see; it is more difficult for them to understand.  But the nurses didn't make me feel like this, didn't make me feel like a fraud, like I was faking my condition.  This genuine understanding was perhaps the most kindness and caring I have received since being diagnosed over three years ago, and it made me feel accepted.  They understood that I genuinely have a debilitating degenerative neurological condition.  This was hugely reassuring, and something I can hardly even begin to thank the nurses of Ward1 LGH enough for.

The role of steroids for MS relapses has been accepted for many years.  Most neurologists now prescribe steroids for acute relapses for people with relapsing-remitting MS (RRMS).  And the evidence seems clear that they shorten recovery time from individual relapses.

It is not entirely clear how steroids work in aiding the recovery process, and I'm not a scientist or a medical personnel or practitioner, so I'm not going to even attempt to try to explain it, it has all got to do with chemicals, and this really is not my area of expertise.  But, MRI studies have shown that steroids significantly decrease the amount of swelling around individual MS lesions, causing better nerve transmission through these affected areas.  These effects are seen on MRI within hours of taking the first dose.  In short then, steroids are found to be helpful.

Everyone reacts different to steroids and to steroid infusions.  Some people experience benefits almost immediately, some people take a little longer for the medication to kick-in, and some people don't really experience a huge change or experience much benefit at all.  But as we know with MS, 'No Two Are The Same' so it probably isn't altogether surprising that people respond differently.

And just as no two experiences of the condition are the same, and no two experiences of Steroids are the same, no two experiences of the side-effects of the drugs are the same either.  Not everyone experiences side effects from IV steroid treatment, but as with most drug treatments there is the possibility of side-effects, and some of the most common side-effects of steroids are:

• Stomach irritation, such as indigestion and/or heartburn
• Increased energy
• Rapid heartbeat
• Flushing of the face, neck, or chest
• Feeling warm or cool
• Retaining fluid (avoid table salt and salty foods)
• Mood changes (euphoria, irritability, nervousness, restlessness) or mood swings
• Metallic taste in the mouth
• Insomnia
• Nausea

To be honest I didn't really experience either benefit or side-effects, well, nothing obvious.  I did experience Insomnia after day two, and on day three my temperature had increased, which for me was actually a blessing as I am always cold, but the nurses noticed that is was easier to take a sample of blood for testing as my hands were warmer. 

I think for me, as much as the medication may or may not have helped my condition, I felt that I was given a huge boost, a really tremendous boost by the lovely and caring Nurses on Ward1.  I felt that my welfare and well-being really was their primary concern.  And who could ask for anything more?  I certainly couldn't.  Nothing was too much trouble.  I was made to feel cared for.  The standard of care from the Nurses really was fantastic, and that in itself was a real tonic.

And as I said before, I can hardly even begin to thank the nurses of Ward1 LGH enough.  Thank You.