8 minute read
Celebrating Sabbah
from Emphasis Summer 2022
by phauk
spot light Fundraising Celebrating Sabbah Sabbah
Some of the volunteers and particpants at the event Some of the volunteers and participants on the day of the event
Friends and family of a young woman who lost her life to PH came together in a special way to raise money and awareness in her memory.
Sabbah (left) and Naseem
Sabbah Wasim was just 41 when she died last year, and May’s event at Cannon Hill Park in Birmingham was a tender celebration of her life.
The sun shone as family and friends walked or ran a 5km route around the grounds, and afterwards shared memories and stories of times spent together.
The event was organised by Sähëlï Hub, a volunteer-led organisation that works to empower women in Birmingham by providing fitness activities and healthy lifestyle advice. Sabbah had spent 21 years as a volunteer Treasurer with the Hub, forming close friendships with her fellow Trustees.
CEO Naseem Akhtar said: “Sabbah was the most committed and supportive Trustee, a cheerleader for Sähëlï Hub. She joined as a girl at 20 and blossomed into an amazing woman. She was fiercely loyal, totally independent, hardworking, and generous with her time and commitment to us, her family and friends. Sabbah will remain in our hearts and our minds, and we will miss her presence at all our activities and events in the future.”
All entry fees were donated to the PHA UK and runners and walkers collected sponsorship too. Those who couldn’t make it made donations in Sabbah’s memory, and in total the celebration raised £2,157 for our charity.
It also generated a huge amount of awareness of PH, thanks to conversations started in the park and media coverage in the lead-up to the event. Sabbah's parents, who shared memories of their daughter at the event
Sabbah and the Sähëlï team
The event was made extra special by the coming together of two families who have experienced loss due to PH.
Cadston Mason, who heard about the celebration when organiser Naseem Akhtar was interviewed about it on the radio, wanted to remember his mother Shena in this special way too. He walked with her sisters and his young daughter in her honour.
Shena died in 2020, and Cadston shared memories of his mum with the group, taking comfort from being around others who understood.
The family raised £256 in sponsorship, and writing on his fundraising page afterwards, Cadston said: “It's been a beautiful event despite the circumstances and it was nice to all come together and share stories of Sabbah and Shena. Sabbah has a beautiful family who you can tell absolutely adored her and are so proud of what she had accomplished. The weather was lovely, and I strongly believe that they were looking down on us.”
We are very grateful to everyone involved in this event who supported our charity in memory of loved ones. It was an honour to be invited along and to capture the event on camera. Please scan this code with your phone to watch our short video of the day.
Cadston and his mother's sisters at the event
Cadston with his children and Shena
Putting By taking part in clinical trials, patients play a vital role in researching new treatments for pulmonary hypertension – and it’s important your voices are heard when it comes to designing them. patients first
people with PH completed the survey. Thank you to each and every one of you! 112
The PHA UK has an ongoing partnership with researchers from the University of Cambridge and Royal Papworth Hospital to ensure clinical trials consider the needs of patients and their loved ones, and earlier this year, we teamed up to conduct an online survey aimed at understanding what matters to this community.
With implications for all future research too, the survey was conducted with the specific aim of shaping the design of a new trial called StratosPHere.
This trial will investigate whether two drugs – phenylbutyrate and hydroxychloroquine – are beneficial to patients with pulmonary hypertension. These drugs are currently being used to treat other conditions.
There are lots of new and innovative ways the team hope to carry out this trial, and this survey asked for opinions on these methods and much more.
The findings will now directly inform the protocol and delivery of this trial, as well as influencing the design of other PH trials in the future.
Over the next few pages, we bring you some of the key findings and comments from the survey. Additional findings around topics including sleep, EmPHasis-10 and the use of technology are included in the full report, which can be viewed online at phauk.org. You can also access it by scanning the code on page 31.
A message from Dr Joseph Newman, Clinical Research Fellow, University of Cambridge and Royal Papworth Hospital: “The COVID-19 pandemic has changed the way that healthcare is delivered. It is also changing the way that research, and clinical trials, are designed and carried out. There are still many aspects that are just done ‘the way we've always done them’. We are keen to re-think this both from the medical and scientific perspective, but also by understanding what is important to you, the patient. We want to make clinical trials as straightforward for you to take part in as possible and measure aspects of your health that most reflect your day-to-day life, without compromising the quality of the results. Overall, the responses to this survey will help shape the StratosPHere trial, being launched later in 2022, but also other future research in PH and other heart and lung diseases. I would like to say a heartful thank you to all the patients with pulmonary hypertension who completed this survey.”
Clinical trials What matters to you?
22%
of respondents said they had taken part in a clinical trial which involved taking a drug for pulmonary hypertension.
94%
of those who have taken part in a clinical trial that involved taking a drug for pulmonary hypertension said they would do so again.
The top 5 reasons people gave for wanting to take part in clinical trials were:
1. To help other people with PH in the future 2. To advance science 3. Because the drug treatment I would get in the trial may help me 4. As a patient with a rare condition,
I am a useful ‘resource’ for science 5. So I can ‘give back’ for the treatment
I have received
Respondents were also asked what might discourage them from taking part in a trial. The top 5 reasons were:
1. I would be worried about the side effects from medication 2. I wouldn’t want to travel a long way, or frequently, to a specialist hospital 3. The cost that may be associated – eg. travel to hospital, parking, or time off work 4. I wouldn’t want extra invasive tests or procedures at hospital (like a right heart catheter) 5. I would be worried about taking a new drug
More results from the survey
Putting patients first
“Even though I am self-employed I usually have to take at least 2 days off to go to the hospital.” “I don’t feel stress about visiting my centre but I feel really stressful about getting there and back.” 82%
of patients attended their PH centre at least once in the 12 months between March 2021 and March 2022 (compared to 92% pre-pandemic)
70%
of patients travel to their specialist centre by car and for 63% of patients, the journey takes more than an hour each way.
93%
Respondents were asked: “If some things that normally take place during your visit could be done from home, such as answering questions about your symptoms, would you be happy for this to happen via telephone / video call instead?”
If asked by a PH specialist to report symptoms, side effects or problems via an app, most respondents said they would be happy to do this: - Daily if it took 5 minutes or less - Weekly if it took 15 minutes or more
Almost all respondents said they would be happy for at least some aspects of their healthcare to be remote.
50% "Yes I would be happy" 43% "Yes, but I would still like face-to-face visits for other things" 7% "No, I would not be happy about this"
82%
of respondents said they have completed a 6-Minute Walk Test at their specialist hospital.
81%
said that if they were trained to measure distance using an app on a smartphone or digital device, they would feel able to complete a 6-Minute Walk Test outside their house.
Concerns included: “Finding somewhere accessible that is flat” “Interruptions from other people whilst outside” “Accurately trying to measure the distances”
Respondents were asked to read short information sheets about the two drugs, phenylbutyrate and hydroxychloroquine, that will be used in the StratosPHere trial.
50% said they would be prepared to take phenylbutyrate as part of a clinical trial and 54% said they would be prepared to take hydroxychloroquine.
phenylbutyrate
hydroxychloroquine
