Philanthropy

CAWC International is proud to be supporting the MND Breathing Support Project, which has the full backing of the Chiltern Branch of the Motor Neurone Disease Association. The MND Association (www.mndassociation.org) is a charity registered in England, charity no. 294354.

All of the money raised will go to the Motor Neurone Disease Breathing Support Project, which is being delivered by members of the Palliative Care Service based at Florence Nightingale Hospice, part of Buckinghamshire NHS Trust.

 Motor neurone disease (MND) describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do. With MND, messages from the motor neurones gradually stop reaching the muscles. This leads the muscles to weaken, stiffen and waste.

MND can affect how you walk, talk, eat, drink and breathe. Some people also experience changes to their thinking and behaviour. However, MND affects everyone differently. Not all symptoms will affect everyone, or in the same order. Symptoms also progress at varying speeds, which makes the course of the disease difficult to predict.

MND is life-shortening and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life. There is a 1 in 300 risk of getting MND across a lifetime. It can affect adults of any age, but is more likely to affect people over 50. MND affects up to 5,000 adults in the UK at any one time.

 

Dr Faeqa Hami DA FRCP, Consultant in Palliative Medicine for Buckinghamshire Healthcare NHS Trust, who is leading the Breathing Support project comments: “The objective of this project is to offer high quality assessments and clinical support for patients and their carers, and the project team is delighted to receive the support of the CAWC in facilitating this work.”

The Specialist Palliative Care and End of Life Care services provided across Buckinghamshire include Specialist Nurses in the hospitals and community; Allied Health Care Professionals (Specialist Physiotherapist, Lymphoedema Specialist Nurse, and Occupational therapists); a Chaplain; a Bereavement Support team and a team of Specialist Nurses and Health Care Assistants in the hospice at home team. 

The hub for all these services is Florence Nightingale House in Aylesbury, which offers up to 12 inpatient beds for symptom control, psychological support, assessments and end of life. FNH hospice also hosts a busy Day Hospice.

The palliative care services support patients who have any life limiting illness including cancer, but also chronic and non-cancer illnesses (such as heart failure; end stage respiratory disease; Parkinson’s Disease and many more). The teams also actively support patients with other neurological conditions, Motor Neurone Disease (MND) being one of them.  

Dr Faeqa Hami has been a Consultant in Palliative Medicine at Buckinghamshire NHS Healthcare Trust since 2002.  She is the medical lead for the Hospital Palliative Care team, but also works at Florence Nightingale Hospice and in the community.

Mrs Sue Eddy is a Highly Specialist Physiotherapist with extensive experience in managing respiratory issues and subsequent complex needs. She has been part of the team at Florence Nightingale Hospice for 13 years, and supports patients and colleagues in managing respiratory symptoms by giving education and training, advice, and most importantly, directly seeing patients in many settings including the hospice, their homes and in hospital.

Both Dr Hami and Sue Eddy are part of the Multidisciplinary Health and Social Care team that deliver care to patients with MND.

The senior clinical and management team at Florence Nightingale House Hospice, and Buckinghamshire NHS Healthcare  Trust, are delighted to be supporting this important project for improving the care of patients with Motor Neurone Disease.

 

Richard Coleman, Chair of the Chiltern Branch of the MND Association, says: “I am very pleased that the CAWC is supporting the 'Breathing Support' initiative, which should make a considerable difference to the quality of life of those with MND and their carers.” 

Motor Neurone Disease Association Logo

 

CHARITY CHRISTMAS BAZAAR

This charity will be the recipient of CAWC fundraising during the next two club years, and will specifically benefit from 100% of the proceeds from the 33rd Annual Charity Christmas Bazaar, which was virtual last year and still raised over £13,400 last year to give you an idea of how fabulous an event it is!