Welcoming winter

expert advice

Welcoming winter

There’s plenty you can do to prepare for both the colder climate and seasonal challenges, as Consultant Pharmacist Neil Hamilton explains…

Neil Hamilton is a Consultant Pharmacist at the Sheffield Pulmonary Vascular Disease Unit. He has many years of experience in the field of PH, both in his clinical role and through his long-standing association with the PHA UK.

Ithought that I’d take this opportunity to summarise the most important considerations to keep you well over the coming months.

Vaccination

A new COVID-19 vaccine has been developed, which covers two strains of the virus (the original, plus Omicron). This vaccine is currently being rolled out and I would recommend you have it as soon as you can.

COVID-19 infections and hospital admissions are on the increase, so this is the best way of protecting yourself. In our hospital (The Royal Hallamshire, in Sheffield), the staff are being offered the flu vaccine too.

Not many people caught flu last winter, so there isn’t so much natural immunity in the population this time around. In addition, we can all socialise without restrictions this winter, so vaccines will be vital in protecting our loved ones and ourselves.

Making sure everyone who is eligible has the flu vaccine as well as the COVID-19 booster has become a priority for the NHS and there are national advertising campaigns reminding everyone, with very good reason.

It is safe to have these together if you are offered them at the same time, and you may be able to receive vaccines at your local pharmacy if that is more accessible to you than a clinic.

Cold & f lu remedies

For anyone with PH unfortunate enough to come down with a nasty cold, or even flu, the local pharmacy should also be your first stop for some helpful advice.

Not only is your pharmacist available without an appointment, but pharmacies are usually open longer hours than a GP surgery, so should be much more accessible.

The pharmacist will be able to advise you which remedies will be best for you. In terms of PH-specific advice, I would advise against patients with PH taking decongestants such as pseudoephedrine (found in Sudafed and other products) as this constricts blood vessels.

I also advise to avoid drugs known as anti-inflammatories such as ibuprofen. Whilst one-off doses may be harmless, these can cause problems with your kidneys and possibly worsen breathlessness.

Whenever you seek advice over the pharmacy counter, it is important that you take along an up-to-date list of current prescribed medicines so that the pharmacist can avoid any potential interactions.

Homecare medication deliveries

Although the homecare providers involved in PH do a great job for the vast majority of deliveries, there are occasional glitches, as with any service.

We are also seeing occasional medicine shortages across the board (not just PH medication). In order to protect yourself from potentially running out, please take the time to do regular ‘stock checks’, so that you can place orders, request repeat prescriptions, or arrange deliveries, in plenty of time.

My advice is to always carry approximately two weeks of additional supply as a buffer. That way if there is any problem, you are much less likely to run out. If you are told of an issue with your repeat medication, have a chat with your local pharmacist who can advise of the likely length of problems and, if necessary, discuss suitable alternatives.

If you have any queries regarding your stock levels or delivery dates, your PH centre is unlikely to have the information you need, so the best people to contact are the delivery companies directly. You may have their number from a welcome pack, but here is a reminder: Sciensus (formerly known as Healthcare at Home) 0333 103 9499 Polar Speed 0800 783 3178 (+ option 3) Pharmaxo 01225 302188 (+ option 1) Healthnet 0800 083 3060 Lloyds Pharmacy Clinical Homecare 0800 090 2056

Postal strikes

Some of you will need to post blood boxes to your PH centre because you are prescribed ambrisentan, macitentan or bosentan. As I write this in the autumn of 2022, the strikes at Royal Mail are already impacting some samples being sent in, and there are further strikes planned in December.

It is much better that your appointment is rearranged for a later date when there is not a strike, than for the samples to arrive at the lab unsuitable for testing.

As always, please arrange your bloods to be taken on Monday, Tuesday or Wednesday so they are not held up over a weekend, but also think about the strike dates so that hopefully your sample is not held up. The strikes may also affect clinic letters, appointment dates and other correspondence, so please be patient.

Winter is often a busy time of year and there is a lot going on, so hopefully these suggestions may help you through it.

A few extra thoughts…

Over and above preparing for a healthy and safe winter, readers of Emphasis may have taken part in PH Day UK on November 4th. As a pharmacist involved in PH, this coincided with the annual 'Ask Your Pharmacist’ week in the UK (31st October - 7th November). You may have seen posters or other communications in your community pharmacy or GP surgery, as we in the profession want people to be more aware of long-standing and new NHS services, plus the skills and expertise on offer in pharmacies across the UK. Community pharmacies are very often open longer and are more accessible than GP surgeries, whilst online pharmacies are increasingly popular as a convenient way of accessing GP-prescribed medicines.

Many of you will know that the PH centres in the UK work closely together, with regular meetings and dialogue. This is so important to ensure that we can maintain the high standards of care we strive for. We all met up in Birmingham recently for the first faceto-face meeting since the COVID-19 pandemic and it was great to see all the centres represented. In addition to an excellent line-up of presentations and speakers, the renewed interaction with colleagues (some new, some old friends) was a real highlight.

Closely following that was our first in-person PH Professionals meeting for a long time, in London. We are fortunate that having not met up in person for three years, it was not de-railed (literally!) by train strikes before and after our meeting.

Regardless of your political view and support (or not) of industrial action, we are having to cope with disruption to our plans in a number of ways, and as

I write this, in autumn 2022, COVID-19 infection numbers are rising again in the expected seasonal wave.

Although everyone will cope with winter in different ways, my advice is to plan ahead and be especially organised to try and reduce the impact of all this disruption. That’s why I thought ‘welcoming winter’ would be an appropriate subject for this issue’s column. . AUTUMN/WINTER 2022 emphasis 41

Hope, family, and faith in the NHS

This winter marks 20 years since Julia Taylor was diagnosed with PH. Here, she shares what has meant the most to her over the last two decades – and why she wouldn’t change a thing…

Julia on her wedding day in 2017 with children (L-R) Chelsea, Matt and Kerry

Iwas 32 years old when I was told I had idiopathic pulmonary arterial hypertension. It was October 2002, and the diagnosis followed a year of being really breathless. I have had asthma since being a child, so my doctor kept putting it down to that, but things got so bad that I couldn’t even carry my handbag.

Eventually, after many tests, I was told that I had PH. I was a single mother, and my children were just ten, nine, and seven. Our lives were turned upside down.

I remember my mum looking PH up on the internet and it saying the prognosis was just 18 months.

I started off on tablets and ended up

With her children in 2002, a few months before her diagnosis going onto a nebuliser for a few years. I would go along to my son’s football matches with a big leisure battery so I could take my medication there. I was in a wheelchair at that point too, and it would be dragged out rain or shine. It was an ‘interesting’ time!

It turned out the nebuliser was helping my lungs but not my heart, so I went onto intravenous medication for quite a few years.

I didn’t think about the prognosis on the internet, I just took every day as it came. My 40th birthday, eight years after diagnosis, was a real milestone. We had an eighties-themed fancy dress disco to celebrate; we never thought I’d get there.

These days, I’m on subcutaneous remodulin, which is implanted under my skin. And although I’ve been very poorly at times over the years, I now basically live a normal life.

I am very well, I can look after my grandchildren, and I can walk to a certain degree. I do have extreme pain when the drug is re-inserted into a different site, which has to happen every few weeks for me, but you take the rough with the smooth. I’m still here, I’m still alive, and that’s the most important thing.

Alongside the medication, I’m sure it’s my mindset that has helped me through the last 20 years. You have to find something to be thankful for, however small, and hold onto it. With her grandsons

I’m very lucky. I have seen my children grow up, which I didn’t think would happen, and I now have two grandsons.

Of course, my medical team have been amazing and played a huge part too. I’m under Royal Papworth Hospital and because I live in Cambridge, my journeys to my specialist centre have never been long.

The team there have seen my highs, my lows, and everything in-between. They have saved my life, and I follow what they say to a T. If they tell me to jump, I ask them how high, and how many times.

Having my children as a focus has also really helped. They have always given me a purpose; family is everything.

I do sometimes imagine what life would have been like without PH, but I don’t think I would change anything because it has made me a better person.

I see life differently; I appreciate the smallest of things. I love being out in nature, I love walking, I love all the seasons… I just have a different perspective and I don’t think that would be the case without everything that’s happened.

I do what I can to give back for the help I’ve had from the NHS. I get involved in trials whenever possible, and I’ve spoken to other patients, at the request of my clinical team, about what it’s like being on IV medication. Hope has been huge for me over the last 20 years. I even have a tattoo on my arm of a Nordic rune which means ‘hope’. You have to find things to be hopeful for, or grateful for, no matter how small. If the sun is shining, that’s great – but if it’s raining, it means there might be a rainbow, or it’s good because your plants are getting watered. There is always something.

Hope is everything. If you have got hope, then there is a future in front of you.

Safe spaces to talk to others affected by PH

Our private Facebook groups are a valuable source of support and advice from people who truly understand. Each group has a strict screening process to ensure those requesting to join are genuine, so you can be confident of privacy. They are safe spaces to talk to other people with similar lived experiences.

PHA UK Official Facebook group

This is our original forum, which now has almost 2000 members. It’s a very active group, with responsive members who offer advice and support at all times of the day and night. Join here: www.facebook.com/groups/125342770826215

PHA UK Official Carers Group

This forum is exclusively for family members, loved ones, and anyone who provides care or support for someone with pulmonary hypertension. Set up in 2021, it is growing to become a valuable source of connection. Join here: www.facebook.com/groups/402808577486104

PHighting On: Life after loss to PH

This group was set up by PHA UK members with our support. It is a safe space for families and friends to support each other, share their experiences, feelings and memories – and connect with others that have experienced loss due to PH. Join here: www.facebook.com/groups/215307796620821

You do need to have a Facebook profile in order to join these groups. Sign up at www.facebook.com – it’s free and easy!