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Archive for the ‘Medical’ Category

Thank Goodness for the NHS

A couple of weeks ago I booked to see my GP. I had a very swollen right foot. This had started about 2 weeks beforehand. It was not improving even when I was sitting in bed with my feet elevated.

My leg was slightly swollen, but nowhere near as much as my foot. I also had some discolouration. Thankfully I had no extra pain. 

Having examined me carefully my GP was concerned that I might have a Deep Vein Thrombosis.  My only previous history of DVT was 40yrs ago, when I was on the pill. My GP was also concerned that I may be at risk of Pulmonary Embolism, a clot of blood on my lungs. I had been getting increasingly breathless – though I did not feel it was any worse than when she saw me in April.

But, being as thorough as ever, my GP advised me to go to my local Accident and Emergency Department ASAP. She printed off all my medical notes to take with me. 

So, less than an hour later I was at a large London hospital. I was checked in at the desk immediately and only had to wait 10 more minutes to give all my details to the clerk.  At this point I will admit to feeling slightly scared, I really don’t want or need another medical issue or diagnosis.

90 minutes later I was seen by a highly experienced professional Triage Nurse called Natalie. My BP was raised at 186/92, my pulse was 124 and my oxygen saturation levels were 92. Both of the latter results are fairly usual for me. My severely reduced lung function had at least, not deteriorated.

Natalie quickly did an ECG – electrocardiograph. This did not show any abnormal rhythms. Despite everything being ok, Natalie made the decision to take me round to the major treatment area to be seen by a doctor.

Within 5 minutes I was seen by Dr Elle. She quickly put a cannula in my hand and took bloods from me. The main test I was going to have was a d-dimer which can show if there are high levels of fibrin in blood. This can give a good indication of the likelihood of having a blood clot in my lungs or leg. 

The results would take an hour to come through, so I settled down to read my kindle again.  Dr Elle had explained to me that the hospital protocol varied, depending on my results. If my d-dimer was raised, I would have an immediate CT scan and possibly be admitted. If the results were ok, I would be sent home with a short course of blood thinning medication. I would then return for an ultrasound scan of my leg after the weekend.

Thankfully my results were negative – whew!! I was so relieved!!

I went home, rested and took my medication over the weekend. I returned to the hospital on Monday for my scan. That too was clear.

Within another week the swelling on my foot was greatly reduced. What caused the swelling remains a mystery.

I couldn’t help but be grateful for all the wonderful care I received. Whilst Dr Elle was fairly sure I had nothing seriously wrong, I was treated as though I did. The reassurance of knowing I would have those tests was priceless. Yet it is so often something that we in the UK take for granted. 

We still have a great NHS despite the efforts of this ghastly government and its predecessors attempts to destroy it.

When I hear of those in the US who cannot get good health care or the level of health insurance they need, it makes me even more determined to campaign to keep our NHS free at the point of use.

 

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Everyday Life, Medical

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Should Nurses go on Strike?

An ethical dilemma.

Last month I watched my Royal College of Nursing colleagues give Jeremy Corbyn a standing ovation at the end of his speech to RCN Congress. I felt proud of the support they gave him.

But 24 hours earlier the RCN made a worrying announcement. They have been balloting nurses about the current pay crisis. 91% of nurses said they’d take industrial action short of a strike. 78% of members who completed the poll said they were prepared to go on strike. This is the first time in 101 years of the RCN that nurses have decided to strike.

I have been a qualified nurse for 40 years. Never in my career have I known nurses wanting to strike. We’ve previously protested about pay. As a student nurse in the 1970s, I and many of my off-duty colleagues marched through the streets of Exeter. I will never forget the reaction of some of the by-standers. Whilst the majority were supportive, some spat at us and accused us of killing patients by being on the march. Nurses were only allowed to march if off duty or given formal permission by a Matron. No patient care was affected by our actions. It took some time for my student nurse pay of £11 a week to improve!

RCN members have now voted at Congress to begin a summer of planned protests. And so they should. There is currently a 1% cap on public sector pay rises. Unless there is a change of government, this will continue until at least 2019-20. The effect being that the average nurse has suffered a real-terms pay cut of 14% since 2010. This is not acceptable. Nurses are now being forced to use food banks.

Our professional registration and indemnity insurance fees have risen. We have to pay these before we can work. Pay and conditions are worsening. Most nurses are now working long 12 hour shifts. When I started to train these had just been phased out, apart from Night Duty. We were told that such long shifts meant nurses were too tired and could make mistakes. Why is the same advice not valid now? 

What can nurses do to highlight their plight? There are few actions they can take without jeopardising care. Working to rule, what would that involve? Not staying on after a shift has ended if there is an emergency? I guess some nurses if they have pressing family issues, such as collecting children from nursery, may feel they can’t stay on. But most nurses I know would willingly stay on to help. Not helping a patient in some extra way? I doubt it.

What would I do if I were still working in the NHS? I really don’t know. I would certainly ‘cover’ so more junior nurses can protest in some way. I suspect when it comes down to taking strike action, most nurses will be very reluctant. I went into nursing because I cared about people and wanted to learn how to help people get better. That still holds true for nurses today. The word vocation may be rarely heard, but nurses still care, deeply.

This current government knows this. It’s why they have treated nurses and other healthcare workers so disgracefully when it comes to pay and conditions. Theresa May did not even bother to acknowledge her invitation to the RCN Congress. Whilst the two other party leaders did attend, Theresa was nowhere to be seen. There are 675,000 nurses in the UK how many votes did she loose? 

I have seen at first hand over the last 6 years how hard nurses work. During that time I’ve had 4 different operations as well as other treatment. Most of my nursing care was good. I saw nurses having to care for confused and elderly post-operative patients in a High Dependency Unit. The unit was understaffed, the nurses not adequately trained. There were not enough doctors  on duty either. 

Visiting a friend in a psychiatric hospital last year, the picture was the same. The ward was chaotic and noisy, with not enough staff. There were no extra staff to provide activities either. The reason? More bed closures including the specialist high care unit.

Yes, nurses can protest outside hospitals or Downing Street. But I cannot imagine any nurse leaving the ward to actually withdraw their labour. In itself that would be a breach of the NMC Code of Conduct. Nurses could refuse to do overtime. But the effect of that will be to reduce their pay even further. 

All I know, is that when nurses are protesting – I will join them. Both as a patient and a nurse. 

 

 

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Mental Health Awareness Week

The Irony of Randomness

This is the week organisations and employers are encouraged to make sure they have structures in place to support staff who may have mental health issues.

It is also a week for some to feel able to talk about their own mental health diagnosis. Another way of marking the week, as many election candidates have done, it to look at ways our NHS should be doing more to prevent young people going into crisis. 

But for me, this week has been one of stress and worry, which could easily be resolved. Under the cruel Tories, I and so many disabled people continue to suffer unnecessarily. I receive DLA and was given an indefinite award 8 years ago. I should not need to be re-assessed. But then the rules changed. Everyone, no matter what their condition, has to be checked up on. This includes people who were born with severe mental and physical disabilities who cannot do anything for themselves. 

Two weeks ago, the dreaded envelope dropped through my letter box. The DWP require me to complete a 24 page form asking asinine questions about my health and what I can and cannot do. This week I have to return it. The irony and randomness of having to so during Mental Health Awareness Week is not lost one me.

Luckily, I’ve recently registered with a new GP and seen a new Consultant so my ‘everything you need to know’ A4 sheet is up to date with diagnoses and medication. I have also got a supporting letter from a Nurse who knows me well. I have warned my GP and consultant they will most likely be contacted.

I have 5 long term conditions, none of which will ever improve. I understand and accept that. But the DWP tick box managers clearly do not. Every 2-3 years they send me another form to complete, with questions on it that bear little relation to my everyday life. Can I lift or move a box? Can I put a pen in a top pocket? Can I touch the top of my head? 

Those of us with arthritic conditions, blood disorders or neurological symptoms, my friends with MS or Parkinson’s, all of us have to  go through this stressful process. It is totally unnecessary. The DWP could, much more cheaply, employ Doctors or specialist Nurses  to paper-check on-going claims. This would ensure those of us who can never return to full health, will retain our allowances. People who may have been debilitated after an injury or by an illness which is curable, would also be assessed and either be transferred to long term benefits or supported back to work.

The same could be true for the many people I know with mental health problems. Some people with a mental health diagnosis will never be stable enough to hold down a job. Forcing then to try and do so is most likely to end up exacerbating their already fragile mental health. 

So this week, I’m merely surviving. I want to thrive and focus on my writing projects, and doing some cyber campaigning for the election. But that’s not possible. I have the Sword of Damocles hanging over me. Will the money I need to live on be cut? Will I keep my car, which is my absolute life line? These are the thoughts that occupy my waking time and stop me sleeping at night. 

What would enable me to thrive? An questionnaire checking up to make sure I have enough support and care hours? That might help ensure I can live something approaching a normal life. The questionnaire could check if I’m socially isolated. Thankfully I’m not, but so many people are. It could also ask if my home is safe to live in, am I free from harassment, and if I can afford to keep warm in winter? 

All of those things would improve my life. Filling out a form to tell someone, with less qualifications than me, the obvious only causes me and all other disabled people stress and distress. 

Maybe next year the focus of the campaign should be to get politicians to understand how to help us thrive and not be burdened with having to just survive. 

 

 

 

 

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Getting the best from your GP – Part 2

Medication and more

6 Know your meds

Understand what medication you have been prescribed. Know their names and how they work. Also be aware of both the generic (scientific) and proprietary (Pharmaceutical or trade) names.

There are lots of online resources. I find this one the best. You can also try this NHS site which gives more of an overall view. 

By understanding what your medication does, you are also able to be alert to side effects. But beware – these can sound very scary. Also, not everyone suffers from these side effects and you certainly won’t get all of them. If you are someone who is aware that you may be easily influenced, give the information leaflet to a close friend or family member who can check side effects for you if you are worried.

7 Always report drug side effects

If you are having side effects from your medication, note them down. Use your notes when you go back to see your GP. If you feel you are getting more side effects than benefits from a medication – don’t be afraid to ask if you can try something different.  

The same medication can work differently on different people. Just because someone you know had side effects from a medication doesn’t mean you will too. 

8 Don’t be afraid to say no!

If you really cannot cope with the side effects from a medication, it is your right to say if you no longer want to take that medication. You should always discuss this with your GP first. But ultimately, it’s your body and your choice.

One of the most common drugs prescribed in the UK are statins. They are very cheap, and are given to patients who have raised cholesterol. One million people were prescribed statins in 2011. 

But thousands of people also suffer side effects from statins. The most common of these side effects are muscle pain and cramps. There is also a risk that statins can increase your chances of getting type 2 diabetes. Statins are often prescribed to reduce a risk of heart attacks caused by high cholesterol. Opinion on statins is divided, even between doctors themselves. 

My own, non-statistical, view talking to friends and family members who have taken statins, is that the side effects some people experience are considerably worse than the risk involved by not taking statins. 

That is my personal choice. If you need to make a decision about statins, or any other medication please discuss your options with your GP first. 

9 Check about supplements 

Many of us now take vitamin and other supplements to improve our health. But did you know they can interact with prescribed medication?

Check out what you are taking or considering buying with your GP. The same advice applies if you are seeing a hospital consultant. Please also tell the doctors or nurses if you are going to have investigations or surgery. 

10 Not all GPs or practices are good

Sometimes things go wrong. Try and resolve you concerns with the GP themselves. If your concern is about one of the reception staff, speak to the practice manager. Your complaint may help them deal with an ongoing issue. 

Where I previously lived in West London, there was an arrangement for my the nearest Chemist to pick up scripts from my GP’s surgery at least once a day. Usually this system worked well. I would order my meds on line and the script would be at the Chemist two days later. The following day I could have my meds delivered. 

However on several occasions prescriptions went missing or couldn’t be found. If I phoned to check what happening there was one particular receptionist who used to get very angry and defensive. On two separate occasions she accused me of lying about what the Chemist had said to me. 

The first time I just thought she was having a bad day. But on the second occasion I spoke to the Practice Manager. It turned out there were some ongoing issues with this particular staff member. Not only was the prescription collection system improved but the incident was used to try and help the Receptionist’s skills training. I stayed with that practice till I moved

Learn about the care other GP practices give disabled people. If you find you have chosen the wrong GP – find a better one. Poor care is not acceptable and you have a right to change your GP.

 

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Ending PJparalysis doesn’t work for us

Carol Midgley’s Comment article in The Times today strikes an arrogant and unrealistic tone. Her assumption that the new NHS campaign #endpjparalysis is good for everyone is not correct or helpful. 

I fully understand the need for post-operative patients to begin to mobilise as quickly as possible to prevent DVT. But the presumption that every NHS patient should be up and dressed during their time in hospital is not realistic. Who is going to help those for are too frail or ill to do this for themselves? 

I’ve had 5 hospital admissions in the last 4 years. Each time I have needed help from nurses to get dressed. Many elderly and frail patients do not even get help to eat their meals in hospital. Who is going to help those people to get dressed?  

19% of the UK population is disabled in some way. We are also likely to make up the majority of patients on any ward. Another article in the same paper talked about the rising number of bed-blocking patients. The reason: there was no social care available for vulnerable people. That care is needed precisely because people cannot do basic tasks for themselves. Forcing all patients to get dressed gives a false impression to Social Workers of how fit people actually are. 

I’ve had Social Workers seeing me at home, dressed, but lying on my bed. They then presume that I’m capable of cooking a meal without help, or doing a myriad of other household tasks. I have most likely used up all my energy for the day, getting that far. Because they see me looking ‘respectable’ a whole set of unrealistic expectations appear in their thinking. These become intrenched and are difficult if not impossible to dispel.

Carol’s final point about needing to wear a bra to feel “fully functional” struck me as particularly ludicrous. Lots of disabled women find it difficult, if not impossible to wear a bra. This is especially true for those of us with arm or spinal problems. Those of us who are fortunate enough to be able to work in some way, may not have the choice to dress as she does. So, Carol, next time please check your ability privilege, before making your judgements.

 

 

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Medical

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Getting the best from your GP – Part 1

Having great interactions

Finding a good GP is essential if you are to get good support and the right medication. It also matters when you need a hospital referral. Because of my nursing background, I also expect visits to my GP be an equal two-way conversation about medication or treatment.

Most GP’s surgeries allow you to order regular medication and book appointments on line. It’s well worth learning how to do this – it really isn’t difficult. Booking non-urgent appointments and ordering medication from home saves time and energy too.

I use the Health app in my iPhone to store all my medical informations. There are similar ones for other phones and they can be accessed even if your phone is locked. If you don’t trust technology make sure you have information available in case of emergency. Some people use Message in a Bottle.

If you have life-threatening conditions or allergies you may want to consider MedicAlert. They do charge a yearly fee, but provide a great service.

1 Do your research

Ask friends and neighbours, especially those with health problems.  If you need a GP who speaks your language, make sure that there are at least two GPs in the practice you choose that you can talk to. The same rule applies if you prefer to always see a woman GP. 

Check the Surgery out on line: the CQC is an indepedent inspection body who rate all GP practices on a variety of standards 

There is a totally independent site. It’s a great place to check. Their reviews are straightforward and give clear percentages for each question.

This NHS run site allows patients to give their own ratings on different services. I don’t find it as helpful as it tends to cite only the best or worse experiences.

2 Don’t think the nearest GP is best

Never chose a Surgery because it’s the nearest one to get to. I have to pass two GP practices to get to see my GP and it’s well worth the extra time. 

My friend Sue who lives the other end of London to me, chose her GP because he was nearby. Sue has type 2 diabetes and in the last 3 months has had 3 leg infections with blisters on her skin. Her GP wouldn’t send her to specialist Diabetic Nurse. He refused to give her a glucose monitoring kit. She was told she couldn’t see a specialist Tissue Viability Nurse about her dressings. She was also told to pay for the wound dressings.

The way she was treated not only broke NHS guidelines, but could have severely endangered her health. Because the NHS is short of money, Sue presumed that what she was being told was ok. She felt she didn’t ‘deserve’ any more care because it was too expensive. I was furious when I heard about this.

I spoke to Sue and explained the care she should be getting. She is now with a better GP. Although the surgery is a 10 minute bus ride away, Sue is getting referred to the right specialists and she will get the right care.

3 Speak to a GP before signing up

If at all possible, ask to speak with one of the GPs at the practice you are considering. This is especially important if you have a rare condition or multiple interacting conditions. You can often get an idea of they way you will be treated in future by the response you get to your request.

Also GPs who are training practices are often more up to date on new treatments and complex conditions. 

4 Find more than one good GP

Most GPs work in group practice settings. So whilst you maybe registered with a specific GP you can be seen by any GP who works there. You will probably easily find one GP who you have a great rapport with. But, GPs have holidays, are sick themselves or they go on training courses. So find at least one more GP in your practice who will know you and can look after you if you need something urgent when your GP is away. 

5 The power of paper

When seeing a new GP or hospital doctor for the first time I always take with me a concise medical history of the 12 operations I’ve had as an adult, my current medication and the allergies I have. This paper also lists the 8 conditions I’ve been diagnosed with and a summary of my current issues. This makes consultations much more focussed and doesn’t waste valuable time going over irrelevant stuff. It also means the Doctor has everything in front of them if they need to write referral letters or evidence letters for Social Services and the DWP.

Part 2 coming soon.

 

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Everyday Life, Medical

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Drinking whilst Disabled – Part 2

The medical information bit

As disabled people we often have a more intimate interest in our bladder than most. At the most extreme end catheters of various sorts are involved.

I have one close friend who has a supra-pubic catheter so we often talk about the problems she has. Supra-pubic catheters are only usually used for people with severe spinal damage or who have had multiple problems using urethral catheter, i.e. one’s that go in through the urethra. 

The articles written by The Times columnist Melanie Reid – who is now tetraplegic following a riding accident describe only too graphically the very small gap between a healthy bladder and severe and life-threatening sepsis. 

When I first realised I needed to limit my trips out to places where I could plot a route between loos, I determined this would not restrict me. I remembered about a card I could carry. I also knew that I could take medication.

The card is called I just can’t wait and is available from the BBF

The medication I take is Oxybutynin which is used to treat people with irritable bladder syndrome and other related conditions. 

Oxybutynin can be taken in tablet form or as a patch. Please be aware there are alternative options and that Oxybutynin does not suit everyone. I’m fortunate, it works perfectly for me in that my bladder control has greatly improved. I no longer have to desperately rush to the loo more often than is convenient. 

This is specially relevant for me in the mornings. I often wake up with severe numbness in both my feet and at least one of my hands and some times both. It can take up to half an hour for my body to decide to start working properly. Prior to medication I would usually end lurching sideways and hitting myself on some furniture or at worst, completely fall over. 

For those who want a non-interventionist approach – there is the option of badder re-training. A leaflet from Kings College Hospital, London gives lots of good information. 

Some women find Kegel exercises help and wikihow has a great set of instructions.

There are also Kegel exercises for men which are sometimes advised after prostate surgery. This is the link to a useful US leaflet. 

Bladder problems are not inevitable whether you are disabled or just getting older. There is plenty of help. Some medical professionals will try everything not to prescribe you medication. But you have a right to access the treatment you want. If you are refused treatment, seek further advice from another doctor or specialist nurse.

 

 

 

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Drinking whilst Disabled – Part 1

The unspoken issue

Next time you are out and see a group of disabled people having a meal – sneak a look and see what percentage of them are having something to drink. My guess is that it will be less than 10%. I don’t mean alcohol either, but tea, cofee or juice.

Why? The lack of fully accessible disabled loos.

Recently I attended a conference of political activists. At lunchtime there were three break-out groups, one for BEME, one for LGBT and a third for disabled people. The first two were held on the upstairs balcony of the main hall – which had no lift access. Thus stopping anyone who was disabled and wanted to attend either or both of those groups.

Having got lunch, those of us in the disability caucus started our discussion about how we could be more involved in our movement. It was a good and lively interaction with plenty of feedback for the Chair of the morning session and the conference organisers.

The conversation widened into the difficulties people had attending local meetings. As I looked around the group I realised, that except for one person, none of us were drinking anything with our food. That person has a hidden disability which requires her to drink regular small amounts of fluid. She is also reasonably mobile and doesn’t always need to use an adapted loo

For many of us, especially those with conditions that affect our spine, we have a constant worry about continence. Yes, I know there are now all those picturesque adverts for Tena Lady or similar products. But, for me at least, they remind me of those ghastly sanitary towels I had to wear at school. I found STs really uncomfortable and was very self-conscious wearing then, especially as they often made my skin very sore. I did try some of the various ‘discrete’ pads, when I first had some bladder problems, but felt they weren’t the answer for me.

But there is another aspect to this, almost every disabled person I know agrees there are never enough accessible loos. Even some of the ones that are marked as wheelchair accessible clearly aren’t – or you have to be a contortionist to be able to lock the door. I discovered one like that at a hospital I visited, which specialised in treating spinal patients!

As I’ve been writing this blog I’ve just seen a Facebook post from a friend who has encountered an “accessible” loo with a door that will only close if she leans her whole weight against it. Not easy and certainly painful if you use crutches and have severe joint pain, as she does.

In my experience the worst buildings for having “accessible” loos that aren’t, are hotels and pubs. But in both those locations the issue is often not just getting a wheelchair into the loo but navigating the various doors to actually get to the loo.

On several occasions I have decided to leave my wheelchair outside the door and stagger into the loo. Only to be greated on my way out with “If you can walk why do you use a wheelchair?” As you can appreciate, I often find it hard to give a polite reply. The best response to this question came from a friend “If you’ve got brain why don’t you use it?”

So I knew full well why I and my fellow activists were all staying ‘dry’ for the day. Many had long journeys to get to London and you certainly can’t guarantee that you will find a useable loo on either a coach or a train. 

This was highlighted by a Paralympic athlete who spoke of her humiliation after being unable to access a suitable loo on her train journey. You can read the article here.

Yes, we know we should drink more fluids – though I consider the two litres a day advice to be a definite myth. If faced with the option of restricting what you drink or not being able to get to the loo in time – which would you choose?

The second part of this post will give information about the options some disabled people chose to help them deal with bladder problems.

 

 

 

 

 

 

 

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Update on my spinal surgery

6 weeks further on I’ve made really great progress. I’m able to sit for longer periods in my chair and soon went back to driving – though I’m finding it uncomfortable on my back still. But I’m due to collect a new car in the next two weeks which has specialised seating. I’m still quite nervous of walking as whilst the numbness and neuropathy in my right foot has reduced, my left foot has not improved. On my follow up visit I was told this is quite usual, and that I may always have to cope with some level of neuropathy. 

I’m able to get around my flat much more easily, and am able to walk a few steps, which is how I was back in August last year. I have to limit what I do & pace myself carefully as I still get spinal pain and of course my breathlessness is another factor in how much my body will let me do. 

My after surgery appointment was good, my wound had healed really well, the scan showed that the surgery was good, but I may need some more surgery in the future as there is some wear and tear damage to another disc. I will be reviewed in 9 months and then yearly after that, with the option of my GP being able to send me to see my consultant straight away if I have any major problems.

The NHS gets many brickbats and complaints, often quite justifiably, but I could not have had better care. This was the NHS at its best and many other hospitals could learn lessons from the way the RNOH treats patients.

There is also good news about the RNOH rebuild. Funding has been agreed to build a completely new hospital on the same site and work has already started. I’ve seen the architects drawings and have to say they look really great, with amazing up to date equipment and design, and specialist areas for children as well as long stay rehab and new surgical suites and wards.

The first class surgeons, nurses, physiotherapists will soon have a state of the art building to work in and patients will be able to benefit from all the new facilities have to offer. 

I’m sure some will miss the old buildings and the tales they can tell, but the RNOH is a flagship hospital which needs and deserves the best the NHS can do. An NHS that many of us are fighting for, to ensure it remains a public service, free at the point of treatment.

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A Trip to the Countryside

 

Sadly I didn’t get to ride the horses!

As readers of my blog will know I’ve had several eye surgeries in the last few years. This year I wanted to be free from hospitals and operations. However, my body had other ideas! 

Whilst my mobility is compromised by both my spinal arthritis and my poor lung function, I can usually stand and walk a few steps without too much pain. I take regular analgesia and my pain levels are usually well managed. But my balance is poor and a few days after a fall in September last year, I experienced a severe pain in my right leg, I was unable to put it to the ground without excruciating pain and soon I had the pain when I was sitting or lying down.

Fortunately I was seeing a Rheumatologist as a follow up after a steroid injection into my left wrist (for pain due to having to try and carry trays of from my kitchen), this was also remedied by getting extra care hours, so I didn’t need to carry stuff. When I went to what should have been my discharge appointment, the Consultant agreed to send me for an MRI. I waited in vain for the appointment, but he was a locum consultant and hadn’t done the referral correctly. Several phone calls later I finally got my scan. When the result came back it was as I had expected, I had a trapped nerve. However this was complicated by a cyst between two of my lower vertebrae L4/L5. 

According to what I understand is now NHS standard protocol, the next step should have been to refer me to the local MSK (Musculo-Skeletal) Triage Team. This is a group of specially trained physiotherapists who decide on treatment according to various treatment pathways. See here for an example of how this works.

I knew that the only way my pain would be resolved would be by surgery and there was no way I wanted a referral to my local hospital. The last time I was an inpatient there following cancer surgery I got a hospital acquired infection which caused wound healing failure and meant that my shoulder wound became so deep that my scapular was visible. The wound took over 15 months to heal. I also knew that weeks waiting for appointments to professionals who couldn’t help me would have a negative impact on my health and well being. More concerning, I had also began to experience peripheral neuropathy, ie numbness in my feet and I knew I needed treatment quickly. This also was affecting my balance, which made any walking really scary. 

One of the advantages of working as a Nurse (my former profession) is that you get to know an awful lot of medics, one in particular came to mind. She had worked for many years at RNOH in Stanmore, a world renowned orthopaedic hospital that specialises in complex cases. I was well aware that I would qualify for treatment there and discovered that I could get referred directly by my Rheumatologist. That should have been a simple letter and the sending of my MRI scan, but in the way of many NHS referrals there were several hiccups, letters not being done, the scan getting lost between the two hospitals, in all it took 3 months before I was finally seen at a wonderful state of the art building in central London.

As soon as I met my consultant I knew I had the best person possible. I had a scan just 30 minutes before I saw him, I had my medical history taken by his Registrar and underwent a rather painful examination, (it took me three days of complete bedrest to recover) the Registrar was very apologetic, but I knew he needed to examine me fully. Then I got to meet my consultant, he immediately pulled the scan up on his computer screen, and took both me and my partner Eve through the images so I could understand exactly what had happened and why I was in so much pain. 

We agreed a treatment plan, I was to be admitted as a day-case so that my cyst could be aspirated to see if that would lessen my symptoms, this would be done by guided imagery and I would also be put on the waiting list for full spinal surgery. 

I quickly got the appointment for my day surgery. I was admitted into a lovely private room, and was taken down to the imaging department where I was placed on my front, given some wonderful short acting anaesthetic and the next thing I knew I was being wheeled back to my room. A few hours later my lovely friend drove us back home. Over the next few days I noticed some reduction in my pain, but that wasn’t sustained, so I was thrilled when I got a surgery date for four weeks later. The date could not come soon enough!

As preparation for my surgery and to prevent MRSA I had to use special body and hair wash, nose ointment and some ghastly flavoured mouthwash! I decided to drive myself to the hospital as there was lots of available car parking and I knew I had friends who could drive me home again. I was admitted to a main ward and promised a side ward after my operation. I had previously been sexually assaulted when I was on an NHS ward by a male patient and am now very nervous of being in mixed sex wards. Whilst there were separate male and female bays, they were adjacent and I did not feel safe.  

The staff were incredibly understanding of this, and one of the Senior Nurses, who was on the hospital safeguarding panel, asked if she could talk about my situation, anonymously, to the panel. I agreed and I hope the way staff supported me would help others who had may have had similar experiences.  

The RNOH could be described as somewhat ramshackle. It is set in 112 acres of green belt to the north of London. It was first built as a hospital just before the WW1 when it became an emergency hospital for the military and also began to house disabled soldiers in 1918. In the 1930’s the hospital became known as the leading centre for the treatment of Polio and TB. Come WW2, lots of Nissan huts were erected to house civilian patients and war casualties. Many of those huts are still being used, with long interconnecting weatherproofed corridors. Some of the corridors are really steep due to the contours of the surrounding land. When I went to theatre my bed was pulled on an electric truck operated by a porter, even the wheelchairs the porters use have electrical assistance. I had been well advised not to have my surgery there in the winter. It looks as if the latest lot of plans for redeveloping the hospital may finally come to fruition, I really do hope so.

Despite the difficulties of the building, everywhere was spotlessly clean and the care I received was wonderful. Firstly the ward I was on had enough staff to care for the patients, a rarity in today’s NHS. All the staff I met treated me well, they understood and accepted my limitations and gave me good personal care. Pain relief was offered regularly and every nurse who came into my room checked my pain score. There were no issues about giving me my own top-up Diazepam for the muscle cramps I sometimes get, in other hospitals I’ve had major difficulties about getting it prescribed and given. The whole ethos of the ward was that everyone cared for the patients. Domestic staff as well as Nurses of all grades were friendly and professional. The one downsidewas the food. The menu was well designed, but the food was not good quality and it was very repetitive, with the same choices each day. I was glad of the extra treats I had taken with me. 

My surgery went exactly to plan, although it took longer than expected due to the difficulty of removing all of the cyst. I spent my first post-operative night in HDU, which is routine for RNOH surgical patients. My previous HDU experience had not been good, to say the least, so I was slightly apprehensive. But I need not have been, my care was great, I was given enough analgesia, and I did manage to get some sleep. The next day I was back on the ward and in my lovely side room. Although the room was small, I always had easy access to my wheelchair, even though staff had to bring it from another area on the ward, and then had to manoeuvre my bed & open both doors. I never had to wait to use the loo and staff were always on hand to support me when moving from bed to chair. 

I saw both Physiotherapists and Occupational Therapists. The Physio was great, and she didn’t push me to do things I couldn’t do, again a new experience, I’ve previously felt very bullied by some Physios. Even the Social Worker came to try and get my Local Authority to sort out my Care Package, this will be the subject of another blog post.

My partner came to see me each day and our Rabbi came to visit too, which was wonderful. By 5 days post-op I was ready to go home. Our Rabbi’s husband came with my partner to drive my car home, the journey was not too painful, other than going over the dreaded speed bumps along our road. I was really glad to come home and see my lovely cats, who seemed pleased to see me. But my biggest treat was a takeaway from our favourite Chinese accompanied by a large glass of wine. Desert was some scrumptious champagne truffles Eve had brought for me.

I’m writing this two days later, my pain levels are reducing, I’ve even reduced my pain killers, but I still can’t spend much time in my wheelchair. But it’s so great to be home. 

 

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