News Archive
Friday, November 11, 2011
Another Teenager spreading the word about PCD
Darryl Mather is helping to raise money but also awareness of PCD. http://www.gazettelive.co.uk/news/teesside-news/2011/11/03/poorly-grove-hill-teen-dedicated-to-raising-cash-for-charity-84229-29709630/
Friday, November 11, 2011
Colgate Periogard Mouthwash Warning
Please see link below about the recall of this mouthwash. If you have PCD you should stop using it asap. http://www.webmd.boots.com/news/20111104/colgate-mouthwash-recall
Friday, November 11, 2011
Great South Run 2011
Fiona and Euan Copeland together with Charlotte Cookson (Fiona’s sister) ran the Great South Run on Sunday, 30th October in aid of the PCD Family Support Group. They were filmed by ITV for the local news and featured on the Great South Run Highlights programme. http://db.tt/pX6qVP5l You can still sponsor them at http://www.justgiving.com/fiona-euan
Monday, October 17, 2011
Summary of Royal Brompton Paediatric Patients Meeting – Monday, 7th November
On 7th November 2011, a Parents Meeting was convened to discuss the Future of Paediatric Respiratory Services at the Royal Brompton in light of the proposed Paediatric Cardiac Service Reconfiguration in London (reduction in service from 3 paediatric cardiac centres to 2 centres in London) and the resultant closure of the PICU (Paediatric Intensive Care Centre) at the Royal Brompton.
Fiona Copeland, Chair of the PCD Support Group was in attendance presenting the concerns of families with children of PCD, alongside the CF Trust and Asthma UK. The concern that Paediatric Respiratory Services were being negatively impacted by improvements in Cardiac services was stressed by all parties alongside the practical implications of the Brompton not being able to perform e.g. bronchoscopies, IVACs etc, without the back up of a PICU, for the care of patients with PCD.
Whilst the future for Paediatric Cardiac Service and so Paediatric Respiratory Services at the Brompton is yet to be determined (7th November 2011 – there was a judicial ruling quashing the consultation due to the way in which cardiac research had been evaluated http://www.bbc.co.uk/news/health-15629222), either a shared care arrangement with Great Ormond Street (GOSH) or a full transfer of Paediatric Respiratory Services to GOSH may be a future possibility, but ONLY with the following assurances in place:
To recap, the future of Paediatric Respiratory Services at the Brompton is as yet to be determined and is dependent on the outcome of the Paediatric Cardiac Review in Spring 2012. The PCD Family Support Group will be maintaining an active role in this matter and will be keeping our members fully updated of developments in upcoming newsletters, but if you have any questions or concerns in the interim, please contact Fiona at .(JavaScript must be enabled to view this email address) .
Friday, September 16, 2011
Autumn 2011 Newsletter
The latest newsletter is now available to read online.
To read the newsletter please click this link: Newsletters
If you would like to be added to our mailing list then please email your contact details to .(JavaScript must be enabled to view this email address)
Friday, September 16, 2011
Questionnaire
We have recently sent out Questionnaire’s to our mailing list re ‘Quality of Life in PCD’ research which is being conducted by Dr. Jane Lucas who is based at the University of Southampton.
If you haven’t received any information and would like to take part then please contact Mr. Neil Botting by email .(JavaScript must be enabled to view this email address) and he will send you the relevant information.
Monday, September 05, 2011
Helpline
We have a new telephone helpline 0300 111 0122 - please leave a message with your name, telephone number and a brief description of the query and someone will call you back within 24 hours.
Monday, September 05, 2011
Fiona has joined Twitter @pcdmum and is hoping to use it to use it to raise awareness of a number of things close to her heart including PCD.
Please follow her! http://twitter.com/#!/pcdmum
Monday, September 05, 2011
Jon Waterman
Jon is an Amercian musician who happens to have PCD.
To raise awareness he has a page on his website explaining what PCD is all about.
Maybe you might like to have a look or do something similar on your websites?
http://www.jonwaterman.com/home.html
Monday, September 05, 2011
PCD Angels
Debbie (Mum to Malachi who has PCD) has started selling PCD Angel necklaces www.pcd-angel.co.uk
For each necklace sold Debbie will donate £10 to the PCD Family Support Group – so please buy lots of them for friends and family to raise awareness of PCD and funds.
Monday, September 05, 2011
Fundraising
If you would like to raise funds for the PCD Family Support Group the easiest way is to set up a justgiving page and ask your friends to donate or sponsor you there.
Alternatively you can now set up a ‘texting’ service so people can just text you their sponsorship money.
For more information see www.justgiving.com
If you need help with this then please contact us.
Monday, August 15, 2011
Royal Brompton Hospital Update
Please find details on the Royal Brompton website about their judicial review into the Safe and Sustainable Children’s Cardiology Review
http://www.rbht.nhs.uk/about/news-events/judicial-review-granted-on-childrens-heart-surgery-consultation/
Further information can be found on how to support the Royal Brompton SOS campaign can be found on http://www.thebromptonfountain.org.uk/home.html
The PCD Family Support Group would like to reassure you that we will continue to work closely with the three centres that specialise in PCD to ensure that any changes to the configuration of the Brompton will not affect the PCD services.
Monday, August 15, 2011
Jeans for Genes Day - 7th October 2011
Have you signed up for Jeans for Genes Day on Friday, 7th October, 2011?
We have been very luck to receive a grant this year to fund PCD Day so please support this great charity!
For more information please click on this link:www.jeansforgenes.com
Tuesday, July 05, 2011
PCD Day 2011
We had a fantastic day on the 25th June. For those of you who were unable to attend please click here to see the full report from the day
Wednesday, June 29, 2011
Children’s Congenital Cardiac Service Review
As you will all probably know following a review of the Children’s Congenital Cardiac Services the recommendations have been made that all of our three PCD specialist centres hospitals will be affected by the changes that are proposed.
Click below for more information:
http://www.specialisedservices.nhs.uk/safe_sustainable/childrens-congenital-cardiac-services
If your child attends the following hospitals you may wish to support their campaigns:-
Royal Brompton Hospital http://www.rbht.nhs.uk/about/safe-and-sustainable/
Southampton http://www.saveourheartunit.org/home.aspx
Leicester http://www.uhl-tr.nhs.uk/formedia/hold-on-to-our-hearts-
For more information please contact us
Wednesday, May 25, 2011
Royal Brompton Hospital Petition
Following a review of the cardiac paediatric surgery Childrens Heart Surgery Review one of the proposals is to remove paediatric cardiac surgery from the Royal Brompton Hospital. As many of you will know this is one of three centres who specialise in the diagnosis and ongoing care of PCD patients
This would have a direct impact on the care of all patients at the Royal Brompton as cardiac services for children do not exist in a vacuum. They are supported by other disciplines such as intensive care and anaesthesia. The consultation has neglected to take account of the wider implications that removing children’s cardiac surgery will have on the Trust and its patients:
- The entire paediatric unit would collapse. Without children’s cardiac surgery the hospital’s paediatric intensive care unit would close immediately, as the number of patients needing it would not be enough to make it financially viable. Without paediatric anaesthesia and intensive care, the life-saving work of the hospital’s respiratory teams would also cease - both anaesthesia and intensive care are needed for many respiratory procedures, such as high-risk bronchoscopy
- The adult congenital heart disease unit would be de-stabilised. Within one to two years the effect of losing paediatric heart services would adversely impact on Royal Brompton and Harefield’s adult service, which cares for more patients with congenital heart disease than anywhere else in the UK. Many of them are treated for pulmonary hypertension by another group of specialists within the Trust, one of just six centres in the UK accredited to treat this disease.
- The health needs of 450 children with cystic fibrosis, PCD and other respiratory diseases. The hospital hosts the largest service for children with cystic fibrosis and PCD in the country. Any re-configuration therefore must include a detailed plan for the break-up and re-distribution of services such as the PCD diagnostic service (one of three centres in the UK), and the dispersal and re-location of its expert teams of staff. The detrimental impact on Royal Brompton’s adult respiratory units, would soon be seen: 70-80% of adult patients progress from the paediatric service
Please sign this petition to ensure that this doesn’t happen.
http://www.thepetitionsite.com/1/save-royal-brompton-hospitals-childrens-cardiac-services/
For more information you can also visit the Royal Brompton website http://www.rbht.nhs.uk/sos/
Please also feel free to contact us if you need any further information.
Tuesday, April 19, 2011
Fundraising and the Charity Commission
There has been a lot of media interest into a charity raising funds for Alzheimer’s in the press today and how little of their money has been spent on research into this cruel disease.
We thought it would be good to remind you we are a registered charity and that you can see our financial records via the Charity Commission website or if you would like greater detail by writing to us via the Contact Us.
We hope that this will put your minds at rest that any donations or fundraising monies that are received by the group are used appropriately.
Friday, April 08, 2011
Adult Lunch
A group of nine met up in central London in mid March for the second meeting of adults with PCD and their families.
Following the success of the first event last year, people were keen to make a return trip to the Pizza Express on Baker Street. Although a couple of folk were sadly unable to attend at the last minute, there were also a few new faces to boost numbers.
PCD folk of all ages - one or two who brought parents or partners - talked about everyday life and the baffling array of pizzas. But they were also keen to swap tips and thoughts about PCD and its treatments.
Topics that came up included the level of satisfaction with patient care at the Brompton, approaches to physiotherapy, and the benefit of exotically-named gadgets like the NeilMed Sinusrinse, the Saltpipe and the PowerBreathe.
A few people showed interest in helping with the running of the support group and after two hours or so the event wrapped up with many promising to attend the Family Day and any future adult lunch.
Watch out for further info about the next get-together.
Tuesday, March 08, 2011
Rare Disease Day 2011
Myra Tipping, Mick and Oliver Wilkin, Fiona Copeland and Dr. Claire Hogg were privileged to attend the launch of Rare Disease UK’s strategy document at the House of Commons on the 28th February.
The document lays down comprehensive guidelines for improving services for people with rare diseases and can be downloaded from their web site www.raredisease.org.uk
We were pleased to welcome a number of MPs as our guests including George Mudie, Iain Stewart and the Speaker John Bercow.
Tuesday, March 08, 2011
Spring 2011 newsletter
We have just emailed and sent my post our latest newsletter.
Please let us know if you wish to receive this by email in the future or let us know if you have recently changed your email address via contact us
Monday, February 14, 2011
Scottish Event
One of our members Debbie (Mum to Cameron aged 9 with PCD) has volunteered to organise a social event for PCD patients and their families in Glasgow in the next few months.
We would like to know if you would be interested in joining us to talk about PCD and meet other people with the condition – if so, please contact us
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Monday, February 14, 2011
Lunch for Adults 20th March 2011
We are holding another lunch on Sunday, 20th March 2011 at 12.30 p.m. at Pizza Express, Baker Street, London. Please contact us if you would like to come.
Monday, February 14, 2011
Rare Disease day
We will be representing the PCD Family Support Group at a reception held at the Houses of Parliament on Monday, 28th February 2011.
Please ask your local MPs to join the event.
To find out more please see the Rare Disease Day website http://www.rarediseaseday.org/article/about-rare-disease-day
Monday, February 14, 2011
Family Stories
We are trying to spread the word about PCD to help raise awareness so that hopefully more children will be diagnosed at an earlier age.
Do you have an interesting PCD story that you would like to share? We would love to hear from you. These can then be used in our newsletters, in presentations that we give and given to the media when opportunities arise.
Please Contact Us as soon as you can
Friday, December 17, 2010
Flu update
Do you have PCD or care for someone with it? Then if so, have you had your flu jab?
This year’s vaccinations cover Swine Flu and it is recommended that you have it.
Please see the government website for more information. www.direct.gov.uk/en/swineflu/DG_177831?CID=SFlu&TYPE=sponsoredsearch
Friday, December 17, 2010
Thanks for completing our PCD survey
The PCD Survey is now closed.
Thanks to everyone who participated. We have had over 100 responses and are currently collating the information. We hope to publish a report by the end of February which will be highlighted in the Spring Newsletter.
Friday, December 17, 2010
Cilliopathy Alliance UK Launch
The launch day was extremely well attended despite the bad weather and tube strikes.
Thanks to everyone that attended. Further details of the day with photographs and details of the presentations will be published soon.
Friday, December 17, 2010
New Rare Disease UK report
A new Rare Disease UK report highlights a number of worrying issues experienced by patients and families affected by rare conditions. The report, “Experiences of Rare Diseases: An insight from patients and families”, deals with the views and experiences of 600 patients and families affected by over 100 different rare conditions on a wide range of topics ranging from research to diagnosis, and access to care, information, support and treatment.
Although some patients and families indicated positive experiences of timely diagnosis and good quality care and support from the NHS, unfortunately this is not the case for the majority of patients and families with rare diseases. There are over 6000 recognised rare conditions each with different symptoms and prognoses, yet the publication highlights how patients and families frequently face common problems. Some of the problems highlighted by the report include:
- Significant delays in diagnosis.
- Patients being misdiagnosed (often multiple times).
- Patients “rattling around the system” having to visit multiple specialists before receiving an accurate diagnosis.
- Difficulties in accessing information and support.
- Fragmented and poorly coordinated care.
- Patients and families having to attend multiple hospital appointments often at a long distance from home.
- Problems during transition from paediatric to adult services.
- A lack of effective treatments.
- Inconsistencies in access to medicines.
- A lack of information and opportunities to be involved in research .
Rare Disease UK is the national alliance for all those with an interest in rare diseases brought together to campaign for a strategy for rare diseases.
The Chair of Rare Disease UK, Alastair Kent said:
“Many people living with rare diseases and their families have to go through years of medical tests and procedures before an accurate diagnosis can be made. Not only is it often a battle to get an accurate diagnosis, patients and families then struggle to find out the medical impact of a condition and how to manage it, on top of having to cope with day-to-day life without adequate support.”
“The results of RDUK’s survey hammer home the need for a co-ordinated UK-wide strategy for the diagnosis, treatment and research of rare diseases. This is a hugely important issue that needs to be tackled; patients and families should not have to face an inequitable level of care from the NHS because they have the misfortune of their condition being rare.”
A copy of the report is available at:
www.raredisease.org.uk/documents/RDUK-Family-Report.pdf
For more information, or to request a copy of the report, please contact Stephen Nutt: .(JavaScript must be enabled to view this email address) 020 7704 3141
Wednesday, November 17, 2010
Luton and Dunstable Coffee Morning
Our first informal coffee morning was held on Saturday, 13th November 2010 in Luton.
We had 8 families attend. The children all spent the morning doing lots of craft activities whilst the parents chatted about PCD. Thanks to Liz and Nicky from Luton & Dunstable Hospital who organised it. Please let us know if you would like help organising a similar event in your area?
Wednesday, November 17, 2010
Top Doctors
Congratulations to Professor Andy Bush and Dr. Rob Wilson who were both in the The Times ‘Top Doctors’ list on Saturday, 13th November 2010. We are very pleased that both of these doctors specialise in looking after patients with PCD and are both members of our PCD Medical Board. Without Andy’s support and encouragement this group may never have started.
Thursday, October 14, 2010
Autumn 2010 Newsletter
Please see our latest newsletter Autumn 2010 Newsletter
If you wish to receive this via email or post then please let us know via the Contact Us
Thursday, October 14, 2010
Faseb Cillia Biology Meeting 2010
We recently partly funded Hannah Mitchison to attend a meeting in America where the sole topic of conversation is cilia.
To read about this then click on the link below:
FASEB_cilia_biology_2010_meeting_report.pdf
Thursday, October 14, 2010
PCD Survey
We are working with the three PCD diagnostic centres to get specific funding for the ongoing care of PCD patients.
To help us better understand your needs please can you complete the survey, that is available through our website, so that we can feed back your opinion to the National Commissioning Group by the beginning of November 2010. Your views really matter so please take a few minutes to complete the survey.
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To do the survey click on http://www.surveymonkey.com/s/pcdsurvey
Thank you!
Tuesday, September 14, 2010
Sunday, 12th September 2010 London Duathalon
7 teams consisting of one runner doing 10km, one cyclist doing 20km and one runner doing 5km competed in the London Duathalon on Sunday in aid of the PCD Family Support Group. The majority of the participants work at the Royal Brompton Hospital including the consultants Professor Bush, Dr. Hogg and Dr. Balfour-Lynn. Fiona Copeland and husband Stuart also joined in! So far over £2k has been raised.
It isn’t too late to sponsor us www.justgiving.com/rbht
Tuesday, August 24, 2010
CANCELLED EVENT – PCD STUDY DAY - Monday, 27th September 2010
Unfortunately this event has been cancelled due to lack of participants. We hope to rearrange the event for Spring 2011.
Thursday, July 08, 2010
Rare Diseases Questionnaire
Rare Disease UK is conducting a survey of patients’ and families’ experiences of access to care, treatment and support in the UK. This survey will be crucial in facilitating their campaigning and awareness raising work.
The results of the survey will:
- Help gain an understanding of some of the issues that matter to patients and families
- Be put to politicians and policy makers to highlight areas of concern/good practice
- Be published in a new RDUK booklet of patients’ and families’ experiences – this will be launched at a reception at the House of Commons in the autumn
The survey should take no longer than 20 minutes to complete. There are boxes at the end of every page if you would like to elaborate on your answers – all the additional information they receive will be extremely helpful, especially to inform the report on a strategy for rare diseases. Don’t worry if you feel that you can’t answer some of the questions just do as much as you can.
The survey is spilt into sections looking into:
- Research
- Diagnosis
- Commissioning and planning (treatment and specialist centres)
- Information and support
- Accessing coordinated care
The deadline for responses is the 31st of July
To participate in the survey please visit the following website:
http://www.surveymonkey.com/s/QZJM8PP
Thursday, July 08, 2010
PCD Day 19th June 2010
We had a fantastic day on 19th June 2010 with nearly 70 adults and 30 children attending. For a full report on the day please click on PCD Day 2010
Friday, May 21, 2010
Ciliopathic Alliance UK Launch Day
We are holding a launch day for the Ciliopathic Alliance on 29th November 2010. All health professionals with an interest in PCD are welcome to attend. More information to follow soon. contact us for more information
Monday, April 19, 2010
Volcanic Ash Health Advice
For the latest update on the NHS advice about the Volcanic Ash Cloud then please see the NHS Website. The general advice is that if you are outside and notice any symptoms such as itchy or irritated eyes, runny nose, sore throat or dry cough, or if they notice a dusty haze in the air or can smell sulphur, rotten eggs, or a strong acidic smell, you may wish to limit their activities outdoors or return indoors.
Friday, April 16, 2010
Spring 2010 Newsletter
Please see our latest Newsletter. If you don’t receive one from our mailing list then please Contact Us and we will add you to the list or download it from the link below:
2010 Spring Newsletter (PDF 362kb)
Wednesday, March 31, 2010
Additional Funding Received from Jeans for Genes
We have today received another £2500 from Jeans for Genes in recognition for the support we gave to the 2009 campaign. We will be using these funds to help complete our new DVD and website project. For more information about the 2010 campaign please visit the Jeans for Genes website.
Tuesday, March 16, 2010
Genetic Interest Group Annual Conference 8th June 2010
The Genetic Interest Group Annual Conference is called ‘Giving Patients a Voice’ and will be held on 8th June 2010 in London. Fiona Copeland from the PCD Family Support Group is a speaker at the event so please come along to support her. If you wish to go then please contact GIG directly. www.gig.org.uk
Tuesday, March 16, 2010
PCD Day 19th June 2010
Our next PCD Day will be held on Saturday, 19th June 2010 in Great Brickhill Village Hall. All people and families affected by PCD are welcome to attend. The aim of the day is to get a better understanding of the condition and to share experiences with others. The children will be entertained and we will give you a delicious lunch! Let us know you are coming via the website Contact Us
Tuesday, March 16, 2010
Royal College of Nursing campaign for Specialist Nursing
Please sign up to support this campaign to keep specialist nurses. Many of you will have access to a Specialist Respiratory Nurse who is your link to the consultants. Without them life would me much harder for some families. Campaign Link
Friday, January 08, 2010
Article in Wellcome Trust Magazine
Rachaell one of our members in Scotland was interviewed for the Wellcome Trust ‘Big Picture’ magazine.
Monday, November 30, 2009
Great South Run 24th October 2010
Fiona and a team from Southampton Hospital are running the Great South Run on 24th October 2010. Would you like to run with us? ” title=“Bupa Great South Run Entry Form”>Bupa Great South Run Entry Form - the fee is £36. If you wish to get sponsorship then Contact Us for more information on how to set up a justgiving page. Thank you
Thursday, October 01, 2009
Fiona’s Colourful FM interview
Fiona, our Chairman, was interviewed about PCD and the Jeans for Genes campaign - listen here (mp3 8.4 Mb)