Hello. The recent story of the NHS being ‘in crisis’ according to the Red Cross is one that hit close to home. The following is an account of the very real human impact a broken NHS is having on the lives of two individuals. It won’t be an easy one to read (or write!) but I hope it provokes some thought. It has been written with Fran’s permission and is written in a purely personal capacity and reflects only our personal views and is not reflective of those of any organisations we work for or represent in any way.
It was an ordinary day in August back in 2014. Fran had been out and she came into the house with a crash and shouted that she had fallen and hurt herself. Falling itself is a fairly regular event so that didn’t phase me. However, the fact that Fran said she was hurt rung big alarm bells. Fran has a ridiculously high pain threshold, so the fact that anything hurts usually means there are significant problems. Little was I to know just how far reaching those problems would be.
Fran said her foot hurt and could not put weight on it. Given Fran’s pain threshold I told her that I suspected it was broken and she would need to go to A&E. With that, she burst out into tears. To that point, Fran had the ability to walk a few meters unaided. When you have reduced mobility, the little that you do have assumes a tremendous amount of significance, especially when you are as fiercely independent as Fran is.
We were taken into A&E after a 45 minute wait for an ambulance as we couldn’t get into hospital in any other way. The staff were really helpful and very apologetic for the delay. Fran was given some much needed pain relief and we made our way into Addenbrookes. After a long wait to see someone, we were sent to x ray and sure enough Fran had a broken foot. No surprise there.
What to do about it though? Having a body that doesn’t work in a typical way can cause real problems for medical professionals who just aren’t used to dealing with how that body works, or what a patient needs. By now I was becoming seriously worried as Fran’s pain levels were increasing and even the highest dose of morphine (which it took some persuading to get) wasn’t working. Such a dose would have knocked anyone else out but didn’t touch the sides for Fran.
The next events were critical. The consultant on duty was called. By now we had been in A&E for hours and Fran’s name had gone to red on the patient sheet. A traffic light system was in use based on how long patients had been in the department. There was a palpable sense of pressure to get something done. What happened was that Fran’s foot was cast in its resting position, facing inwards. Fran screaming throughout. It was one of the most horrific things I have ever experienced. If you have ever witnessed a loved one in pain you will understand what a painful thing it is to witness and just how powerless you feel.
The result of the foot being cast in that way was that Fran’s foot was irreparably weakened, never having been the same since. By acting in haste out of the desire to patch up Fran and ship her out, the course of Fran’s life was profoundly altered. Fran was referred on to the foot specialist after A&E.
In what was to become a regular pattern to this date, I then has to constantly press and battle to get things done. The first meeting at the foot clinic was a good example. It was the name of the consultant that was on the clinic. The appointment that took weeks to come through, despite it being ‘urgent.’ Except it wasn’t actually the specialist we saw, it was his junior, who had no experience of dealing with Fran (the consultant had operated on Fran due to a sporting injury she had in a matter of days when she had private medical insurance as a result of her funding. If only we were able to afford that now!) and couldn’t help. I phoned back, complained, explaining why it was necessary to see the specialist, and fortunately this happened at an appointment a week later.
It took literally months to get anything done. Out of desperation, I even took some money out of savings to get Fran seen quicker by the same specialist. Fran needed some more tests. An ‘urgent’ CT would take 3 months. At this point Fran was in bits. She was living in the lounge of our house, unable to move, let alone leave the house or work. Again, out of desperation I got on the phone. I was able to discover that there was a portable CT machine that nobody was supposed to know about, and get the CT scan done quicker.
In the mean time Fran was in plaster and her foot getting weaker and weaker. After a period in plaster, we fast forward about 12 months to the Christmas of 2015. After the worst and most difficult 12 months we have ever had, we decided we needed to move house to give Fran some quality of life. Other ways to do this via the NHS were unsuccessful. Fran waited 12 months for an appointment at pain clinic, which she had been dropped off at by her carer. As someone with a first class degree and a masters she is more than capable of attending appointments by herself. The pain clinic consultant however didn’t see it this way and upon seeing Fran in her wheelchair on her own and his first words to her were “Where is your carer?” “Hello” and the ability to engage with Fran as an individual was apparently too much to ask for. 12 months on, she is still waiting for a promised follow up appointment.
The last example of the broken system I will refer to is some experimental surgery Fran had in December 2015. The specialist said he would try an experimental procedure to loosen Fran’s foot. Because the foot had originally been cast in its resting weakened position it had set there, weakened and now needed to be loosened if Fran was able to regain her mobility and the independence that went with it. Due to a cancellation, this was scheduled for the night before New Years Day. Fran had the surgery but was unable to move and needed injections.
There was no way of organising any other help over the festive period so we had to ask Fran’s mum and one of our close friends for help. That was the difference between being discharged and a long stay in hospital. Also because Fran needed injections, and it would be difficult to get a nurse to do it, I had to learn to give them, which was not without difficulty given my own lack of fine motor skills. Still, as ever we found a way and Fran was able to come home. Unfortunately the surgery did not improve things and Fran has lost 90% of the little mobility she had prior to her fall, which has been devastating to come to terms with.
I have not had the time, energy or strength to chase these things up, so things are currently in limbo. Countless appointments have been promised, cancelled and just not happened. It should not be a full time job to ensure someone gets the care and treatment they are entitled to Fortunately we were able to find a bungalow that Fran is able to get around in and has recently returned to work after having her car adapted. The house didn’t need much doing to it to make it accessible, which itself is a minor miracle, and have made our own adaptions.
So when I hear the NHS is in crisis I am not surprised. The system is as damaged as Fran’s foot. This is a shocking reflection on those who run the system which creaks despite the good will of those who run it on the front line.
More must be done and the system must improve for the good of patients in its care. Ours is just one story, but I wouldn’t wish the experience we have had on our worst enemy.