The Madrugada Associação has provided palliative care and support to over 100 people and their loved ones in the Algarve since 2009. They are based in Praia da Luz, and they offer support throughout illness and beyond, to people in the Algarve who are affected by a life limiting illness. Their specialist clinical team provide home-based end of life care to those who prefer to spend their remaining days in their own home.
The Madrugada Centre in Praia da Luz helps people and those who are important to them, to manage the challenges of life limiting illness through counselling, therapeutic and creative activities, complementary therapies, advice and education.
We have chosen them to be our ‘Charity of the Year’ for 2018, so we went along to their centre to meet the President Carol Spires, and the Vice President, John Hough, to find out more about them and their work.
They were established in February 2009 in response to limited choices for end of life care in the Algarve; and their professional palliative care team provides home-based, end of life care and support to anyone 18 years and over, affected by a life limiting illness. Their support also extends to carers and close family members too.
There is no charge for their end of life care service. Patients may refer themselves or give permission to be referred by their Consultant, GP, and other healthcare professionals or by a close friend or family member. Referrals are considered on clinical criteria and appropriate home environment for safe and effective care.
Through their Support Centre they offer people with a diagnosis of a life limiting illness and those important to them, support throughout treatment and beyond, by facilitating a range of complementary therapies, psychotherapy, counselling, creative activities, physical activities, group therapy, information and life style advice. They also offer family and bereavement counselling during illness and after the loss of a loved one.
Since 2009 they have cared for 105 end of life patients and provided thousands of hours of support to people affected by life limiting illness, and this number is increasing annually. In addition they have provided hospital visits, equipment, telephone support, information, health workshops and professional development education.
Importantly they have also raised the profile of home-based end of life care and supportive therapies in Portugal.
Their services are in demand throughout the Algarve. Currently, they are only able to offer 24 hr care to those living in the Western Algarve; and further into the Central region they offer a slightly reduced service. It is their aim to expand their provision to ensure its availability across the Algarve region, giving equal access to all.
Madrugada is a not-for-profit association, and apart from the nursing and care providers who are paid an hourly rate, all other support and help comes from unpaid volunteers. They have a clinical manager, Tanja, whom we also met, and currently they have five registered nurses and five carers.
Typically, their care provision at end of life can last from 4 to 14 days. At a daily cost of circa €500 for 24 hour care, this soon adds up to a substantial outlay in both nursing and equipment costs. Where possible, Madrugada endeavours to offset these costs through medical insurance and donations from patients and their families. However, more often than not, there are insufficient funds available to cover the cost of care, and crucially their care provision is always free – they do not ask anyone to pay – their assessment is based purely on asking the question “Can we help this person?”
Fund-raising is obviously critical to their success – and an ongoing need. They currently have a clothing store and furniture store in Luz, with plans to open another store in the future, and they rely totally on fundraising events, shop profits and donations. Their website has ideas for fundraising and a downloadable Fundraising Pack giving lots of ideas and information.
They also utilise their care and nursing staff through their linked Hibiscus Home Nursing and Health Care company – which provides an individually created care plan for individuals who pay for this bespoke service, and all profits from this are routed back to the Madrugada service.
Their previous President and founder of Madrugada, Alison Blair, was awarded the MBE in the New Year’s Honours List, in recognition of her work in setting up and driving forward the association, so we were keen to talk to the new President Carol and VP John about their plans for the future.
Can you tell us about your plans and what are the most pressing needs facing you at present:
Madrugada has two main goals in mind for 2018. Firstly, we must find a new centre for our support activities and administrative offices, as well as a new premises for our successful ‘Home Store’. These could be combined or separate but must allow for disabled access and increase our area for storage and stock management.
Secondly, we are really keen to increase our numbers of volunteers. These unsung heroes are the mainstay of Madrugada who give freely of their time to run the charity shops and to source and manage our stock; organise events and help to fundraise in a wide variety of ways, and in general, help to keep Madrugada afloat to provide our vital support services.
Is Palliative Care unusual for Portugal and the Algarve? (We asked Tanja about this one)
During recent years awareness has improved and we understand that at the moment there are 43 official palliative care beds in the Algarve. 10 in Portimão and 33 in Sta. Catarina/Tavira. The focus in Portimão’s palliative care unit is mostly on pain and symptom control.
Nationally there is more awareness of Palliative Care which is now included on the Master’s course at Lisbon University for post graduates. We were privileged to be involved in one of the workshops in July 2017 at the invitation of Professor Dr Antonio Barbosa and Dr Michael Tapley (UK). Professor Antonio presented Madrugada Associação with a recently published book that he had jointly written with other leading Portuguese doctors about Palliative Care in Portugal.
There are a lot of steps in the right direction. In 2012 the “rede cuidados palliativos” was brought to life, but initially very little has happened. The task is now, to have a palliative care section (Nova Equipa Comunitaria de Suporte Cuidados Paliativos do ACES) in all Centro Saudes by the end of 2018. The Algarve was due to have this service by October 2017, however, when we tried to access on behalf of a Madrugada patient, the palliative care doctor was not available for 10 days and that was too late.
At the moment it appears that not all the units are covered, or one doctor is responsible for several of the units and so there is a long waiting list. However, it is new and we are sure it will get improve with time. Our intention is to develop a relationship with them to offer our support and experience for the benefit of patients who are end of life.
There is also SOS Oncológico in Lagoa, which is a private association.
SOS Oncológico is a non-profit, regional association (Algarve), based in Lagoa (Algarve), which aims to support cancer patients and their families in terms of information (on the evolution of the disease, etc.), technical assistance and, in the future, health care (in the home or in an inpatient unit), and may also extend the support to people with other disabling chronic diseases in need of Palliative Care. Our understanding is that the person wishing to benefit from the service has to demonstrate that they cannot afford to pay for them to be able to benefit from free support.
It appears with any of the help available it is solely focused on the patient whereas Madrugada considers the patient and their loved ones, be it family or close friends.
Do you treat all nationalities?
Madrugada’s door is open to all comers here in the Western Algarve. We offer support to anyone who asks and who qualifies within a simple set of criteria.
What are the biggest challenges that you face?
It is inevitable that the resident population gets a bit weary of constant pleas for support from the many charities and aid organisations endeavouring to help a myriad of good causes. We are hugely aware of the need to communicate with our support base and to continually remind people how worthwhile and important our work is to end-of-life patients and their loved-ones. Equally, we do not take for granted the generosity and goodwill that is out there. It is a great challenge to generate sufficient funding to be able to provide the care and support for which we have gained a very positive reputation.
Madrugada has made a significant and on-going investment in providing appropriate palliative care training to our nursing and care staff. As awareness grows of what Madrugada provides and demand for our services increases, we will need a larger pool of qualified practitioners to meet this challenge.
Can you tell us more about your plans to open another store – how many volunteers would that require and how would it work?
Our goal is to roll out our services across the Algarve. To be able to do that, we believe income and fundraising initiatives need to take place near to or within the communities most likely to call upon us. If a town or municipal area can benefit from our hospice-at-home service, then we would hope that the local population identifies with Madrugada as the provider and feels a sense of ownership of the provision within their area.
Historically, this community approach leads to greater fundraising success and long-term viability of service availability. So, the most visible form of support is to locate a charity shop in the local area. This is a very significant commitment in terms of time and goodwill. Typically, for a charity shop to open 35 hours per week, a team of over 30 volunteers need to be on board willing to give their time week-in, week-out so that the doors never close. This is not all front-of-house activity either. The behind the scenes work is where all the sourcing, collecting, sorting, displaying and delivering is carried out.
The challenge of course is to find a suitable location for access and footfall, along with sufficient space to be able to create a decent retail environment. Our next target area for expansion is the Lagoa/Carvoeiro area.
Can you tell us more about your ideas for creating ‘Listening Volunteers’?
This is a service we would like to initiate this year. Madrugada would provide training for volunteers to meet with visitors at the Madrugada Centre to be able to offer, non-judgemental, warm, caring, empathetic, support to those who call in to the Centre, be they a patient, carer, family or loved one of someone with a life limiting illness. Many people in this situation want someone to talk to and with whom they can share their concerns and worries. The Centre will also be able to offer information and advice from clinical professionals. The process to identify and appoint Listening Volunteers is selective as this role may not be suitable for everyone.
How can people help you – how can they donate – or fundraise – or help in other non-financial ways?
- On line via PayPal– To make a payment by PayPal you can either:
– Send your payment directly to us on the PayPal site using the following email address firstname.lastname@example.org
– Ask us to send you a PayPal payment request, in this case, please confirm the email address associated with your PayPal account to email@example.com
- By Direct Debit from your bank to:
Account number 40230973026
Name: MADRUGADA-ASSOC AJUDA SUPORTE P A DOENÇAS TERMINAIS
IBAN: PT 50004571944023097302619
- By personal Portuguese cheque made payable to Madrugada Associação and delivered to: Madrugada Associação, Rua Direita 100, Praia da Luz, 8600-160 Lagos, Algarve, Portugal
- For UK donors, you can use the service provided by GCEN Global Currency Exchange Network to make sterling donations to Madrugada.
For more fundraising information please go to their website – click the link here:
They are also hoping to pull together a group of like-minded people who would be willing to be involved in organising or supporting fund raising events. Please contact them via their website if you would like to be involved.
The word ‘Madrugada’ means ‘the moment before the dawn’ in Portuguese, which was obviously an appropriate choice for a new charity – however with changes ahead for them it also seems an apt description for where they are at present.
We can highly recommend them as a worthy charity to support and fundraise for – and we hope to do our bit this year for them too. Dave will be ‘passing round his tin’ and making a collection after each of his Photography Walks this year – we were delighted to donate 300€ last autumn from just a few walks and hope to better that this year; and Alyson has plans to look at how the newly formed Algarve Society of Artists can support Madrugada too .. it would be great to have some original art work from our members donated to brighten the walls of their new centre when it opens, and also to look at how we can extend an art therapy programme for them.
For more information – just visit their website or FB page via the links below: