Last week I was contacted by PIP Health - a patient healthcare company - and asked if I would take part in an interview that was being undertaken by Atlantis Healthcare to help understand more about PAH patients' unmet needs and challenges. It is hoped a series of interviews with PAH patients will help to develop methods that may improve and support patient care.
Interviews were being undertaken over a couple of days and I had my interview which lasted for around forty five minutes or so and was able to highlight a few concerns that I had had when I was a PAH patient. I discussed how one of the hardest parts was the lack of understanding within the medical profession and how this impacted on visits locally to the GP surgery, A&E and admissions to local hospitals.
PH is very complex with varied specialist treatments according to the classification and types of PH. I found no one outside my specialist centre who had even heard of IPAH or my specialist intravenous drug Flolan. I always felt the doctors at my GP surgery should have had better understanding of my drug should I ever have been in an emergency situation, which often threatened. I felt just some basic things should be marked on my file: 1) that the IV drug needed to run twenty four seven at all times 2) that it should never be disconnected and used to administer other drugs 3) what the drug was for and what it did. The GPs involved in my care were only really concerned with my general drugs. Obviously I did inform a doctor at my surgery, but it is a surgery with several doctors including locums and you are not allocated any specific doctor.
It was even harder on admission to another hospital other than my PH centre, which happened on several occasions and my husband had to come in and make the drug up instead of the professionals. I had to be very possessive about my line, pump and drug, as I couldn't really trust anyone would have a clue what they were doing with it. Most would remark they hadn't seen anything like it before or heard of Flolan. I also had doctors trying to take me off various oral medications - because they didn't understand the condition properly - I knew that would put me in an even more life threatening state. Every single time I had to visit a GP or hospital I had to stand firm in my own knowledge of my condition and medication. It leaves you feeling completely vulnerable and unsupported however hard you try. You live in dread of an emergency happening - and if one happens - I always found it was on a weekend, evening or Bank holiday, which exacerbates that vulnerable position as locum doctors are normally on duty and A&Es are pushed to the limits.
We also discussed the need for wellbeing, emotional and financial support locally, but it seems to be a bit hit and miss varying on where you live or which GP surgery you attend. Our centres are usually excellent and can provide us with some of this, but I recall coming out of hospital with a Hickman Line and on my intravenous drug and again feeling very vulnerable, unwell and trying to find my feet on my own.
I had my eyes opened following my transplant, a letter from my physio to the local hospital triggered things into action locally. A heart failure nurse came to the house to assess the help I needed, although it was very nice to be offered help, support and advice and it was welcomed, it also made me really cross. Where was this help when I really needed it? It's no good when I have a brand new heart that beats strongly - what about when I actually had to live with heart failure? Advice on physio, diet to get my strength back and aids around the house would have been most welcome. When I first arrived back home after a long hospital stay with deteriorating PH and poor prognosis, there was no offer of any help or home visits from anyone and we were left floundering on our own locally. We just muddled through and used disabled websites to buy equipment such as bathing aids and wheelchairs.
Those were the biggest 'gaps' that I found in my care, mainly this lack of 'joined up' thing with my PH centre and GP. I did stress, however, that my centre had always offered very strong support and the PH nurses used to phone me regularly and I could phone them whatever time of day. I had a twenty four hour emergency card with numbers for the hospital, however on some occasions staff in A & E had refused to use it. I was always grateful for the support given by my centre, but they weren't the ones near home should I have an emergency.
The psychologists from Atlantis Healthcare put forward several ideas and suggestions to help improve support for patients, which I felt were appropriate and very good ideas. One was to create an online 'symptom tracker', where patients can record their daily symptoms including drug side effects. This tracker would also be available at the patients PH centre, so medics there can track how patients are doing. I thought this was a great idea as it is our symptoms that can often indicate when things are going wrong or deteriorating. I thought this could be even better if it could be extended to our GP surgery too: it would help put that joint care into place.
Drug side effects, which I suffered quite badly from, would perhaps be taken more seriously too. We know we have to be on the drugs as we probably wouldn't survive, but sometimes side effects can be as debilitating as the PH.
We also discussed having a facility for recording all the medications patients are prescribed on some online system too. This could be updated and monitored by patients and their centres. This would give historical and current information at a glance and perhaps have necessary warnings about interactions and safety measures included - eg. IV meds aren't to be disconnected. I thought this was another good idea.
All in all I felt it was a very good discussion and I felt the concerns about the support PH patients need is being taken very seriously. Hopefully there may be some developments from this in the near future.
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This week's photos were taken at Wrest Park, Bedfordshire, an English Heritage site.
©KAGraham
