A year on.. A message from a professional patient on behalf of the NHS

This is a series of blogs starting from the day I was diagnosed with an acoustic neuroma. If you want to start at the beginning then please follow this link: 

https://stellavig.blog/me-and-my-acoustic-neuroma/

I have had a wonderful but difficult year since my operation on February 27th 2017. I have celebrated my 50th birthday, my son’s 21st and had a great Christmas and New Year! I have reread my thoughts from a year ago and they are still fresh in my mind but almost feel like those of a different person.

I now realise that I should have listened to my Surgeon and my Husband! (sshh don’t tell him that!) during my recovery as they had realistic timelines for my recovery. I needed to go back to work to escape being a patient and challenging myself to be a professional again. I was lucky to have an employer that valued me and allowed a prolonged phased return to work. I went back on call early, despite advice, as I needed to prove to myself that I could do it! I was exhausted most of the time but this improved slowly.

I finally feel almost back to normal. I still get headaches and balance issues if I get too tired, especially at night. This has made me redefine my abilities and resilience, a process which is so frustrating. It is impossible to multitask in the way I used to but I have developed strategies to cope with this and my friends tell me they can’t see a difference.

My hearing has not improved and I cannot localise sound at all. My kids find this very amusing but it is so annoying. If someone asks me a question when I am giving a talk, I cannot see where they are and cannot hear where they are either! I have to declare my hearing up front to the audience so that they can let me know where they are. My hearing has also become an important part of the WHO checklist in my theatre. This ensures that everyone is aware of anything that might cause a risk in theatre and ensures that theatre staff do not whisper into my right ear! It is really funny when I sit in meetings and the person to my right whispers something into my ear and I have to do a 180 degree turn to find out what they are saying!! Not discreet!

The follow-up scan confirms that although there is a small sliver of residual tumour, it is still benign and not growing. Full resection was sacrificed to ensure that I still have a working facial nerve which was most important to me. It has been confirmed that I will need ongoing scans but at longer intervals and that these can be carried out locally rather than travelling up to Oxford.

The original acoustic neuroma was 3cm in size and although this has gone, I have gained so much experience to guide me to deliver patient care.

I had only been in hospital before with the birth of my two children and needed care when I developed a ruptured anterior cruciate ligament (and was on crutches for 9 months). My other experience was as a daughter with both my parents needing acute care provided both locally in North Wales and in London. My father died two years ago at 91 and required carers as well as acute recurrent care. Although I thought that this and working in the NHS itself allowed me to deliver patient focused patient care, I still had much to learn. I am now still learning and hope to role model and teach this to my trainee colleagues.

The amazing Elizabeth O’Riordan, a Consultant Breast Surgeon who herself developed breast cancer recently said’ The one thing I have learnt through being a breast cancer patient was that I knew nothing about what is was like to live with breast cancer although I had spent 20 years studying it’.

I felt that I was enabled to seek the advice I needed, to consider and develop my thoughts and decisions with regard to my treatment. I hope that this is what I have already practised for many years, giving my patients all options open to them and helping them decide what they wish to do. I am often asked ‘ what would you do?’ and explain that I cannot give them this answer. I found myself asking the same question of my Surgeon but also of my colleagues and getting the same response.

What I had underestimated was the impact on my family and friends. I could not have asked for better care and positivity from them. My current and previous trainees were wonderful and kept me buoyant. My husband, children and siblings were amazing and helped me to recover quickly. My close friends got me up and walking and fed me, my next door neighbour visited daily, more than I would ever have expected. They all rallied around and I just cannot say thank you loudly enough and owe them so much.

My husband was involved in all my decision-making and never once told me that I was wrong. He was able to give support as he had been involved in my consultations and asked questions that helped. We are always taught that if a patient is competent that they can make their own decisions about their care. I was competent and a professional and still needed support to make my decision. Healthcare professionals understand that when we break ‘bad news’. normally cancer diagnoses, that support, often with nurse specialists, is of benefit. Patients are encouraged to bring an advocate with them, not only to support them but also to remember what was actually said and not what the patient wishes to remember. I was given leaflets and advice but learnt so much through the blogs of others and social media. Liz O’Riordan comments on the same. Maybe we should encourage our trainees to reach out to these sites to understand the patient journeys that they start their patients on. A nursing colleague has used my blog in her teaching for her junior staff and I have had many people reach out to me on behalf of themselves as well as relatives, just as I reached out to those who had gone before me in various Facebook groups.

So how do people who are on their own access support? Or those who are not IT literate?  How do healthcare professionals support these individuals if they are on a benign journey rather than one that is supported by cancer nurse specialists?

When I was in hospital, my family were able to be with me and my inpatient time was short. I valued the ability to talk to them and they were reassured by my improvement and desire to get home! Current governance does not allow healthcare professionals to discuss patient details over the phone with relatives unless consent is given. In addition, with nursing and medical staff shortages, often the teams are busy or not available when relatives come in to visit after they have finished work. I have witnessed families feeling lost as they are unaware of what is planned for their relatives, when they visit in a weekend and are told that they need to wait until their team comes back in. Patients may not even be aware of who is the attending Clinician as many teams buddy up care and rotate on a daily or weekly basis. This is where I have really tried to change the way that the teams and I behave. Patients and their relatives need to be engaged in decision-making including timing and dates of treatment and discharge.

In surgery, this process is easier as one can normally judge the time needed to recover in hospital. In medicine, this is much harder as most inpatients are admitted as emergencies and many in crisis, due to a paucity of social care and mental health funding. We often say that discharge planning should be started as the patient enters the hospital but due to staffing and pressures within the system, this may not happen. This may lead to inefficiencies and patients staying a day longer than expected but with the reduction in the NHS bed base, each day and hour matters. All patients should have an estimated date for discharge as they are admitted allowing everyone to plan accordingly.

In a system that is not fully resourced, healthcare clinicians are struggling to provide excellent patient care and this shows with the recent dissatisfaction for the first time with the NHS.

The public and politicians need to decide what they want to do to resource the ever expanding need for healthcare. I received excellent care from my clinicians despite being treated in a Trust recently placed in special measures. The compassion and communication encompassing my care was excellent and enabled my family, friends and I to return to normality rapidly.

Communication is an enabler within the NHS and healthcare professionals need to ensure that this is embedded at every level despite funding and time issues.

The NHS will only survive if we value our staff and ensure that this is both in morale and salaries. There is also a need to empower our patients to regain independence as much as they are able and understand the health choices that they make and encourage them to be the decision makers.

Stella Vig, an NHS Enthusiast and Survivor