Scotland’s independent think tank
Scotland’s independent think tank

A Patient’s perspective – Liz Bow

Let me introduce myself. 

I have Spina Bifida and for much of my life I have required NHS intervention. This has given me great appreciation of the health service and the good it can do when it is working well. But, as with many other patients, I have also experienced frustration and disappointment.

I have had the privilege of representing patients on many groups including, the Nairn Patient Participation Group and NHS Quality Improvement Scotland. I also chaired the Nairn Access Panel which was aimed at increasing participation, integration and inclusion in Nairn, and was fortunate to be involved as a patient representative in the planning for the multi-disciplinary community hospital in Nairn.

From my experience I think there are two particular issues that need to be addressed by the NHS in Scotland – understanding the importance of good locally delivered care; and improving data sharing.

Staying local

In Nairn I have experienced first-hand the many benefits of good local care. Without the wonderful support from my GP practice and local Community Hospital I would have spent many months of my life in bigger hospitals, away from my family and community.

Continuity of care is so essential for a complex case like me, but because of the different way of working in Nairn, continuity of care is still delivered in our community. The local team involves nurses providing out of hours response care with our own GPs on call 24/7. The whole local team liaise and co-ordinate with the hospital and community care to meet individual needs.

The staff are confident and proud of their work. And being treated and looked after in my own community, by people who know me, also helps build up trust and understanding between patient and medic.

I am aware that this way of operating is not the norm across Scotland and the level of holistic care that I am used to is sadly lacking in too many general and acute hospitals.

Obviously not everything can be done at a local level and specialist services are required. Thanks to the ability of a GP to provide a referral to a named consultant anywhere in the UK, I was able to have highly specialised lifesaving back surgery for my scoliosis in Nottingham in 1998, surgery that could not have been delivered in Scotland.

We don’t need every specialism to be delivered everywhere in Scotland, but we do need access to specialist teams and individuals who are able to treat us in a timely manner.

During the last 12 months I have experienced care in a district general hospital, a London city hospital, and our local community hospital. The hospitals were each appropriate for my care needs at the time. However, time in the district general could have been reduced by transferring me for the second week of treatment to our community hospital, which would have enhanced my care and prepared me for discharge.

Data sharing

The period in the London hospital also highlighted to me another issue that the NHS needs to address in terms of sharing information.

I became very unwell recently whilst on holiday and I had to spend time in emergency care in London. The experience was a far cry from what I am used to.  

Caring staff were fighting a losing battle, unable to provide the care needed under impossible circumstances. I had seen news coverage of such problems, but to experience it as a patient was challenging. 

I was ‘fortunate’ and spent only 12 hours on a trolley. The hospital was at capacity,  there were no free beds and at least 20 trolleys with very unwell patients being cared for by paramedics & ambulance staff. 

I was also surprised at the fact that the NHS England were unable to access my medical records from NHS Scotland. As I have outlined, I have required a great deal of medical care over the years, so to find myself in a situation where I was unwell and struggling to convey information directly, it seemed incredulous to me that the NHS in England could not access my records.

While health is devolved and responsibility for the service rests with two different governments, in this day and age bureaucracy seems a poor excuse for an inability to share data.

Indeed, this is not only a problem that exists between countries, but also within Scotland where information is not always shared between GP and hospital; or between hospital and health worker. How many of us have had to explain our history on multiple occasions because there is not shared access to our files? Again the local multi-disciplinary approach in Nairn has reduced this problem locally.

I am now ticking the last box for age group on forms.  This is a genuine refection on the excellent health and community care I have experienced, without which I would never have reached this milestone.

I have had a long and happy married life, 2 beautiful children, but have also had great sadness and loss. I have benefited greatly from being part of a hugely supportive community in Nairn, a community that came together to create a wonderful legacy for our family in the town, www.teamhamish.org. That community sprit has been key to the wonderful healthcare I have been fortunate to receive and I hope others can learn something from our successes.

Liz Bow MBE

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