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Commemorative Oak Tree Planting Ceremony The Royal Bolton Hospital

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Tree Planting Bolton Pulmonary Fibrosis Support Group

Friday 1st February 2019 in the grounds of the Royal Bolton Hospital an Oak Tree and Time Capsule was planted to commemorate the first anniversary of the formation of the Bolton Pulmonary Fibrosis Support Group. The Oak Tree and Time capsule was awarded, to the group, by Manchester Airport as part of their 80th Anniversary of the opening of the Manchester Airport. 80 trees were awarded to schools, colleges organisations businesses who had to state why they needed a tree and what it would signify to them. In our application I wrote:

I thought the Oak Tree would be the perfect representation for our group in many appropriate and fitting ways:

  • The group being formed last year, it would be fitting tribute, both germinated and established in the same year 2018.
  • Both having the will and determination to grow in strength and become recognised.
  • The branches of the lungs being represented by the trunk and branches of the tree as represented in our logo.
  • Both supporting life and providing resources for the benefit and future of others 
  • Remembering that “from little acorns great things grow”

Knowing the tree will be around long after its present members have passed on and possibly the group. It will be a reminder that people cared and gave their time and effort to support each other, to give recognition when it was needed.

Commemorative Oak Tree & Time CapsulePlanting in the grounds of the Royal Bolton Hospital
Oak Tree and Time Capsule Planting at the Royal Bolton Hospital 1st February 2019

The Time Capsule contained: List of members of the support group, along with the groups Constitution , Aims and Objective, Copy of the Application for we submitted in our successful bid for a Greater Manchester Health and Social Partnership. Photographs of Royal Bolton Respiratory Consultants and Nursing Staff and DVD of the Royal Bolton Pulmonary Rehabilitation Programme. Information from Action for Pulmonary Fibrosis, The British Lung Foundation. Bolton Community and Voluntary Services. patienMPower. Recordings of Support Group Interviews Bolton FM Radio. Press cuttings of Famous Celebrities and Film Stars who died from Pulmonary Fibrosis, Keith Chegwin, TV Presenter. Marlon Brando Holliwood Film Star, Evil Knievel Famous Motorcycle Stunt performer.

Time Capsule  and Contents  helped by Buddy patientMpowers Mascot 

Breathing in and breathing out is the most natural thing in the world, unless you suffer from the devastating lung disease, pulmonary fibrosis. It gradually destroys the lungs, making breathing difficult.  Around 70,000 people in the UK have pulmonary fibrosis with half suffering from idiopathic pulmonary fibrosis, which has no known cause or cure.  6,000 die each year of idiopathic pulmonary fibrosis – more than the better-known leukaemia. The average life expectancy from diagnosis is between 3 and 5 years.

Chairman Steve, who has spearheaded the support group in Bolton along with founding members John Latham Secretary and Ken Ruscoe, Treasurer said:

“The planting of the tree and time capsule is a fitting tribute to our patient support group and also marks our first anniversary. Knowing the tree and time capsule will be around long after its present members have passed on will be a reminder that people cared and gave their time and effort to support each other – remembering that ‘from little acorns great things grow’.

Steve Jones, Chair of Trustees for Action for Pulmonary Fibrosis, said:

‘’Since the charity began in 2013 we have helped grow the number of support groups across the UK from six to 67.  The support group in Bolton has proved invaluable in helping patients and carers meet each other, develop mutually supportive relationships and be informed on treatment options.  The planting of the tree and time capsule is a wonderful way to pay tribute to the group.”

Michaela Bowden, Respiratory Nurse Specialist, said:

“I’m very pleased that by having the tree and time capsule in the hospital grounds we are able to raise awareness of this disease and mark the formation of the local support group.”

Stephen Morgan-Hyland Tweeted:

Thank you for inviting Lorna & I from @ActionPFcharity to share in the wonderful @BoltonFibrosis tree planting Steve, John, Michaela, you epitomise the importance & value of #PulmonaryFibrosis support groups Central to #APF aims is providing support to the growing UK-wide network

Dr Saiyyid Raza Lead Consultant Respiratory Physician.

Thanks for organising a fantastic event.

Manchester Airport 80th Birthday Oak Tree Celebration

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Manchester Airport

Manchester Airport celebrates its regional roots with 80 oak trees up for grabs

Communities across the region are being given the chance to apply for a commemorative oak tree and time capsule as part of Manchester Airport’s 80th birthday celebrations.

The UK’s third largest airport announced earlier in the year its intention to plant 80 oak trees to mark the milestone, as part of a wider programme of activity.

Oak symbolises 80 years and the airport is searching for local organisations that would like to have a tree planted in their grounds to join the celebrations. The English Oak is one of the best known native trees, with the gifted tree being 4-6ft tall before growing up to a magnificent 130ft tall with a broad crown and open canopy allowing light to seep through to the ground below.

Each successful applicant will also get a special time capsule to plant alongside the tree, which will come with an item from Manchester Airport, such as an 80th birthday commemorative badge, and can then be filled with items of their choice. With the usual lifespan of an oak tree being around 200 years, and some living over 1,000 years, the time capsule will be a fantastic opportunity to leave a lasting legacy for future generations.

Bolton Pulmonary Fibrosis made a detailed submission to see if we could granted one of the 80 might oak trees.

To whom it may concern,

On behalf of the Bolton Pulmonary Fibrosis Support Group I would like to submit an application to be considered for one of the 80 oak trees  and time capsules.

We are a newly formed support group made up of men and women who live with Idiopathic Pulmonary Fibrosis, which is a terminal disease with a life expectancy from diagnosis of between three and 5 years. At present there is no known cause for the disease although research is ongoing and subsequently no cure. The only treatment available, at present is drugs and medications to slow down the progression of the disease.  Unfortunately a lot of General Practitioners and Hospital Consultants are aware that the condition actually exists. It is this reason that patients go undiagnosed until the later stages of the disease. The planting of one of the commemoratory trees would bring more attention and make more people aware of this little know condition. A fitting place for the tree to be planted would be?

I thought the Oak Tree would be the perfect  representation  for our group in many  appropriate and fitting ways:

  • The group being formed this year, it would be fitting tribute,  both germinated and established in the same year 2018.
  • Both having the will and determination to grow in strength and become recognised.
  • The branches of the lungs being represented by the trunk and branches of the tree as represented in our logo.
  • Both supporting life and providing resources for the benefit and future of others 
  • Remembering that “from little acorns great things grow”

Our Time Capsule would contain items related to Pulmonary Fibrosis and present day knowledge of the disease. The names of the members of the Bolton Pulmonary Fibrosis Support Group and its officials, along with the consultants who are treating and supporting us at this present time. We would look to having the tree planted in the grounds of the hospital or hospice.

Knowing the tree will be around long after its present members have passed on and possibly the group. It will be a reminder that people cared and gave their time and effort to support each other, to give recognition when it was needed.

If we are unsuccessful I wish every success to each and every organisation and cause that will be represented by the mighty oak

Many thanks

 

I am delighted  to announce that we were successful in our application.  We are to collect our 5 foot Oak Tree and Time Capsule at the end of November. Discussions are now taking place with Royal Bolton Hospital for a Tree Planting Ceremony in early December. Date to be announced. 

EU-IPF Federation Associate Membership

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EU-IPF Federation Official Logo

We are pleased to announce that the Bolton Pulmonary Fibrosis Support Group has been accepted as an Associate Member of The European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF). Obviously we are delighted to to have been accepted as an Associate Member of this internationally recognised body, thereby increasing our support for Idiopathic Pulmonary Fibrosis (IPF) internationally but our own members also.

Who Are The EU-IPF Federation

The European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) is a non-profit organisation that brings together European national patient associations committed to defending their vision of equal access to treatment and care for all IPF patients, regardless of geography, socio-economic status or age. Our common view has encouraged us to officially establish the first European IPF and other related disorders federation in July 2016.

Our commitment and ambition are grounded in one of our key achievements: the development of the European IPF Charter, which was launched in the European Parliament in September 2014. The Charter lays down the rights of IPF patients and concrete policy recommendations that, if adopted, would ensure improvements in patients’ quality of life whilst supporting efforts to find a cure.

We aim to serve as a trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and supporting research for IPF whilst defending the interests of IPF patients at European level. We fight for equal access to treatment, information and ensuring exchange of information between national patient groups.

Each year, during IPF World Week, IPF patient associations across the world join forces to raise awareness of IPF, call for better access to care, and bring hope to those living with the disease. If you would like to know more about the EU-IPFF and the work they do download their leaflet EU-IPFF Breathing Hope or visit their website

Stem Cell Therapy and IPF

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Lung Stem Cells

Pulmonary hypertension, high pressure in the blood vessels of the lungs, is a common and serious complication of chronic lung diseases, including idiopathic pulmonary fibrosis (IPF).

IPF is a type of interstitial lung disease, which causes progressive scarring, leading to the lung tissue thickening and stiffening. In particular, it affects the interstitium, or the area between the alveoli where gas exchange takes place in the lungs, and the blood vessels. The scar tissue reduces lung capacity and restricts gas exchange, resulting in less oxygen being transferred to the blood.

The exact mechanism through which IPF can cause pulmonary hypertension is not well understood, but it is thought that the scarring restricts blood vessels, impeding blood flow and making it more difficult for the heart to pump blood through the lungs. Another theory is that the damage response and resulting scar tissue reactivates pathways involved in lung development and triggers vascular remodelling. This can change the shape of the blood vessels, such as causing them to narrow and restrict blood flow.

IPF is a debilitating and fatal condition, and while current therapies can help to improve survival and quality of life, there is  no known cure. However, research into promising approaches like stem cell therapy is ongoing.

What is stem cell therapy?

The body is made up of many different types of specialised cells that fulfil specific functions.

Once a cell is specialised, it generally cannot change and will only divide to produce similar cells. Stem cells are different in that they have the potential to develop and specialise into multiple different types of cells. Depending on where the stem cell originates, the type and range of cells it can develop into will differ.

By administering stem cells to IPF patients, it may be possible to generate the new lung tissue necessary for effective gas exchange.

Mesenchymal stem cells (MSCs) are now being investigated to treat IPF due to their ability to potentially reduce inflammation in the lungs. Damage caused by inflammation can lead to scarring in the lungs, so reducing lung inflammation may be able to lessen further scarring.

MSCs can be obtained from various tissues, including the adult bone marrow, umbilical cord blood, and the placenta.

Stem cell therapy in clinical trials for IPF

Both ongoing and completed clinical trials have investigated stem cell therapy in IPF patients.

A proof-of-concept, open-label Phase 1 clinical trial (NCT01385644), carried out at The Prince Charles Hospital in Brisbane, Australia, aimed to determine whether MSC therapy was safe and feasible. The study enrolled eight IPF patients, who received either a high or low concentration of MSCs. Trial results, published in the journal Respirology, suggested that the therapy is feasible and both doses were well-tolerated, with only minor and short-term adverse effects. At six months after treatment, the patients showed no worsening in their condition.

A Phase 1 randomized and blinded, placebo-controlled clinical trial, called AETHER (NCT02013700), enrolled 25 IPF patients at the Interdisciplinary Stem Cell Institute at the University of Miami. The trial aimed to assess the safety of MSC therapy, and gain a preliminary idea of its efficacy over a 60-week period. Participants were randomly assigned a single dose of one of three concentrations of MSCs or to a placebo. The trial is ongoing, but no longer recruiting participants.

Results from nine patients, who were treated and monitored for the full 60 weeks, have been published in the scientific journal, Chest. These results did not include a placebo arm. The treatment appeared to be well-tolerated and no serious side effects due to the therapy were recorded. However two patients died for reasons attributed to disease progression.

The only study currently recruiting patients is a Phase 1/2 clinical trial (NCT02745184) taking place at two sites in China. Researchers intend to isolate lung stem cells from the patient’s own bronchi (the large tubes of the lungs) and expand them in the laboratory. About 20 enrolled patients will then receive a single injection of their cultured lung stem cells directly into the area affected by IPF.

To assess the safety of the treatment, patients will be monitored for side effects for up to one year. Efficacy will be measured by  changes in several lung function and exercise ability tests. The primary test, at 48 weeks post-treatment, will be the change in forced vital capacity (FVC), or the volume of air that can be quickly exhaled after a deep breath. The trial is expected to finish in December 2018.

Genome England Project

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100,000 Genomes Project

About Genomics England

Genomics England, with the consent of participants and the support of the public, is creating a lasting legacy for patients, the NHS and the UK economy, through the sequencing of 100,000 genomes.

Genomics England was set up to deliver the 100,000 Genomes Project.

This flagship project will sequence 100,000 whole genomes from NHS patients with rare diseases, and their families, as well as patients with common cancers.

Our aims

  • To bring benefit to patients
  • To create an ethical and transparent programme based on consent
  • To enable new scientific discovery and medical insights
  • To kickstart the development of a UK genomics industry

Our history

Genomics England was announced by Jeremy Hunt, Secretary of State for Health and Social Care, as part of the NHS 65th birthday celebrations on 5 July 2013.

Jeremy Hunt

Secretary of State for Health,
Rt Hon Jeremy Hunt MP

He said: “The NHS has a long track record as a leader in medical science advances and it must continue to push the boundaries by unlocking the power of DNA data.

“The UK will become the first ever country to introduce this technology in its mainstream health system – leading the global race for better tests, better drugs and above all better, more personalised care to save lives.

“Genomics England will provide the investment and leadership needed to dramatically increase the use of this technology and drive down costs.”

Genomics England will be efficient, flexible, and able to move quickly as the market changes. It will contract with others for most of its needs including sample collection, analysis and data storage but crucially, it will maintain clear responsibility for data protection.

Genomics England will manage contracts for specialist UK-based companies, universities and hospitals to supply services on sequencing, data linkage and analysis. It will also strictly manage secure storage of personal data in accordance with existing NHS rules designed to securely protect patient information.

This project represents a great opportunity to translate our world class genomic science into world leadership in genomic medicine.

Genomics England is funded by the Department of Health & Social Care in the medium term, and any surplus will be invested back into improving health. It is chaired by Sir John Chisholm, former chair of the Medical Research Council.

Sir John said:

“This project represents a great opportunity to translate our world class genomic science into world leadership in genomic medicine. Genomics England will create a dataset of anonymised whole genome sequences matched with clinical data at a scale unique in the world.

“Participating patients will have the opportunity to benefit from clinical insights derived from the sequencing of their genome while at the same time contributing to knowledge which will be valuable to the whole patient community. It is from that knowledge that world leading therapeutic products and processes will become available to all patients.”

It is estimated that one in seventeen people are born with or develop a rare disease during their lifetime. At least 80% of rare diseases have an identified genetic component, with 50% of new cases of rare diseases being identified in children. However, it can take considerable time and expense between a patient first presenting at a doctors and receiving an accurate diagnosis. The time taken to sequence a whole human genome has been dramatically reduced and will become more affordable for routine use as the price continues to fall.

Professor Dame Sally Davies, Chief Medical Officer

Professor Dame Sally Davies,
Chief Medical Officer

Chief Medical Officer Professor Dame Sally Davies said:

“By putting firm foundations in place through Genomics England, this technology will let us make ground-breaking discoveries about how diseases work, who could be susceptible to them, how we can treat them, and what treatments might work.

“Earlier diagnoses will help to reduce uncertainty and stress for patients and families involved.”

Professor Mark Caulfield is the chief scientist for the company. Mark is a NIHR Senior Investigator at the Queen Mary University of London and the Barts National Institute for Health Research Biomedical Research Unit.

 

 

Health and Well-being Investment Fund

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Fund featured image

The Fund

The Health and Well-being Community Investment Fund is enabled through Bolton’s Transformation Fund Investment through the Greater Manchester Health and Social Care Partnership. 

Aims

The Health and Well-being Community Investment Fund supports an asset-based approach to promote, strengthen and develop what makes and keeps us healthy in Bolton. This means we want to focus on the amazing array of skills and resources our community and the people who live here have.

Background

The investment reflects policy maker’s commitment to put community involvement at the heart of health policy and practice. Policy shapers and makers are starting to look at how engaging individuals and their communities in health and well-being can ease the pressures on the health service by developing people’s knowledge, skills and confidence to manage their own care.

It aims to promote, strengthen and support what makes and keeps us healthy in Bolton.  There are two levels of investment:

a) Investments up to £5,000 a year, for up to two years

b) Investments between £5,000 – £10,000 a year, for up to two years

We are pleased to announce that an application was submitted to Bolton CVS for a 2 year investment on the 31st January 2018. If our application is successful it will mean that the Bolton Pulmonary Fibrosis Support Group is off to a great financial start. We will hear if we have been successful within 6 weeks from the submission date, before the 7th March. The funding will allow us to be self sufficient for the first 2 years by which time our membership will have increased. Fund raising activities will have been organised completed, with others planned. The people and doctors of Bolton will be better informed and have a greater awareness of Idiopathic Pulmonary Fibrosis and how it affects individuals, family members, friends and carers Fantastic.  

Preliminary Meeting of the Bolton Support Group

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Preliminary Meeting Venue for the support group

Bolton Pulmonary Fibrosis Support Group Preliminary Meeting

A new support group for people affected by Pulmonary Fibrosis is being set up in Bolton by a group of men and women who have IPF and know how it can affect peoples lives. They have organised a preliminary meeting for anyone who would be interested in attending, learning more about IPF and receiving support from the group. The aim of the group is to provide support and information regarding pulmonary fibrosis. An invitation is extended to anyone  who is affected by Pulmonary Fibrosis including their partners, family, friends and carers.

It will be an informal meeting with tea and coffee available. A short presentation to outline of how the Support Group  will be run. Guest Speaker Lorna Mc  If you would like to attend please contact Stephen 01204 397804 or John 0757 304 735

www.boltonpulmonaryfibrosis.org

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