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Archives for April 2016

Empowering people with incontinence and their carers

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Empowering people with incontinence and their carers to live independent and dignified lives at home and in their communities

Study conducted in six European regions contributes to better understanding of how to improve the care for people with incontinence in their daily lives at home and in the community.

Patient involvement, knowledge and provisions based on patient profiles were found to be key in enabling people with incontinence and their carers to live independent and dignified lives.

Berlin, 19 April 2016 – The results of a major pan-European study which gives insight into the quality of continence care services and provisions was launched today at the 6th Global Forum on Incontinence: “Sustainable health and social care: The role of Continence Care in enabling Independent and Dignified living”.

The study was conducted by AGE Platform Europe, a European network representing over 40 million older people in Europe, and SCA. Entitled Management for Containment – A review of current continence care provisions, the study was conducted amongst people with incontinence and informal carers in six regions in Germany, Poland, England and Spain. It aimed to provide an understanding of the existing knowledge patients and carers had about the containment products that are available, and to what extent they were involved in the decision about which product type to use.

The main findings of the study were:

  • 1 in 4 said the product type offered did not always sufficiently support them when taking part in the activities of daily life
  • 43% felt that their product type did not always sufficiently support them when taking part in work activities
  • 41% experienced disturbed sleep due to product type
  • Nearly 40% felt they had no choice on what product type they could use
  • 3 out of 4 needed to pay for additional products themselves

“In today’s context of demographic ageing, it is increasingly important to take action to ensure that the support for managing incontinence fully meets the individual’s needs and preferences”, Anne-Sophie Parent, Secretary General of AGE Platform Europe, said. “There is a lot of room for improving the care of people with incontinence by involving them much more in the decision-making when selecting containment products”.

The study highlighted three key factors that could lead to greater user independence and satisfaction in daily management:

  • information and knowledge about the different product types
  • involvement in selecting the type of product
  • tailored funding provisions based on patient profiles and needs

The findings of the study aligned closely with the conclusions drawn from an Expert Roundtable held in 2015. Eight leading European patient and civil society organizations joined forces and identified six recommendations to improve the care of people with incontinence in a Joint Position Statement calling to:

  • Recognize continence care as a human right which enables people to live independent and dignified lives
  • Increase awareness and understanding of incontinence among users and informal carers
  • Improve information about incontinence and continence care provisions
  • Enable choice, involvement and empowerment of people affected by incontinence
  • Develop continence-friendly urban/community and home environments
  • Support and prioritize a research agenda on incontinence

Eurocarers, the European network representing informal carers participated at the roundtable. John Dunne, President of the organization stated: “Incontinence is a prime example of a challenge to restore independence and dignity and keep people active in, and contributing to society”.

ENDS

Media Enquiries

For the Management for Containment – A review of current continence care provisions study

• Anne-Sophie Parent, Secretary General, AGE Platform Europe
Tel. +32.2.280.14.70
annesophie.parent@age-platform.eu

For the Joint Position Statement Patient & Civil Society Representatives Roundtable – Incontinence and the provision of better continence care at home and in the community

• John Dunne, President, Eurocarers
Tel. +32.2.741.24.05
jdunne@familycarers.ie

About the Global Forum on Incontinence

The Global Forum on Incontinence (GFI) is a high-level stakeholder forum that brings together policy makers, patient and civil society organizations, health and social care professionals, experts, and payers from all over the world to discuss and improve the organization and management of continence care at home and in the community. The 6th edition of the GFI will address the burden of incontinence compared to other chronic diseases, the cost of inaction, the ‘state of the nation’ of continence care provision today, and the importance of a more person-centered, functional needs- and outcome-based approach to continence care that will enable people with incontinence, and their carers, to live independent and dignified lives at home and in the community.

The GFI is organized by Svenska Cellulosa Aktiebolaget (SCA) in partnership with AGE Platform Europe and Eurocarers, and with the endorsement of the following organizations: International Continence Society, International Alliance of Patients’ Organisations, European Association for Directors and Providers of Long-Term Care Services for the Elderly, European Centre for Social Welfare Policy and Research, European Institute of Women’s Health, Canadian Nurse Continence Advisors Association, European Union Geriatric Medicine Society, European Health Management Association, Health First Europe, Zentrum für Qualität in der Pflege, Bundesarbeitsgemeinschaft Selbsthilfe, Care England, International Federation for Spina Bifida and Hydrocephalus.

www.gfiforum.com
@gfiforum
#gfiforum2016

Where’s the recovery for Family Carers?

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Family Carers Ireland are shocked and angered to hear today of a decision by the HSE to cut Home Care Packages and reduce home help hours.  “We have been informed of a national directive issued by the HSE to all managers to implement these cuts as a matter of urgency” stated Catherine Cox, Head of Communications, Family Carers Ireland.  If this directive is to be implemented it will be detrimental to family care in Ireland and fly directly in the face of the commitments given under the National Carers Strategy to recognise and support family carers and care in the home.  These cuts come at a time when we are seeing a justifiable restoration in public sector pay on one hand while slashing vital budgets for supports to older people and people with disabilities on the other – how is this fair or reconcilable? We are calling for an immediate reversal of this directive and brutal attack on care in the home.

Home care packages and home help hours are a crucial element of caring for a loved one with high dependency in their own homes by helping family carers with difficult tasks such as dressing, showering, hoisting and feeding highly dependent loved ones.  Home Care packages are particularly vital for patients who are transferring from hospital to home to be cared for by a family member ensuring that the carer has the supports that they require to care safely for their loved one and thereby prevent their re-admission to hospital.   Home help hours provide family carers with a much need break from their caring roles safe in the knowledge that their loved one is being well cared for.  Cuts to these services take away older people and people with disabilities choice to live in their own homes where they wish to remain for as long as is possible.

We have seen continuous cuts to these services, particularly over the last 5 years during austerity times, but now that we are moving out of the recession how can these further cuts be justified? We should be seeing increases in these vital supports and not cuts!

We are calling on the Acting Minister to halt this attack on family carers and care in the home by withdrawing the directive with immediate effect as it will only serve to place more pressure on an already heavily burdened hospital and homecare system.

Press statement 15th April 2016  

Carers Count – Census 2016 Q22

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Census night is on April 24th and question 22 is an important one for family carers as it asks people to record whether or not they are a family carer and to count the number of hours they care per week.

This information is vital for the planning and delivery of services and supports for care in the home and Family Carers Ireland often use this information and CSO statistics in our lobbying efforts and discussions with Government.

Family Carers Ireland thinks that many carers are not filling out this section properly, some don’t see themselves as fitting within the definition of carer and others underestimate the number of hours they provide caring. That is why we are running our Carers Count campaign and are looking for your help so we can get a more accurate picture of family care in this census.

Carers Count A5 Poster

 

4.1% of the Irish population marked themselves as a family carer in the last census compared to 11% in Northern Ireland. Partly this is due to a different definition of family care in the two jurisdictions but we also think it is because many carers don’t see themselves as carers. We’re asking you to help us reach those people and for them to consider marking themselves as a family carer on the 24th April. The Census definition is broad enough to include those who care around the clock, those who are in employment and also care for a loved one, young carers, those in receipt of carers allowance and carers who don’t receive this payment. The attached leaflet on Question 22 makes it clear the broad range of people who should tick the carer box on Census night. So please read this leaflet carefully and share it with other carers in your life.

Post-Election Update and Thank-You

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With no government yet formed since the election in February, it may seem difficult to see how progress might currently be achieved on any social issues. Reflecting on the responses to our pre-election campaign, however, and while acknowledging the difficulties faced, there are reasons to be hopeful for positive changes in carers’ lives and increased awareness and acknowledgement of their enormous contribution to society. All parties with representatives in Dáil Éireann have committed themselves to supporting carers; in particular the six major parties have all committed to a renewed and funded National Carers’ Strategy, and included in their pre-election manifestos explicit and concrete measures through which they intend to support carers. Family Carers Ireland also wrote to independent candidates and smaller party representatives, and there too we secured broad commitment to support our campaign priorities. Hustings events held in our centres around the country were well-attended – and we would particularly like to acknowledge the excellent work of our centre staff in organising these events – and the level of engagement from carers from all around the country in all aspects of the campaign was very encouraging. There was a very positive response to our initiatives from carers at our Respite Weekend in Mayo. We would like to thank those who participated there; carers who attended our hustings events; who submitted comments to our website and shared their experiences online; and all those who took the time to ask candidates out canvassing where they stood on issues affecting carers. The responses both from individual candidates and in official party communications was very positive, and, regardless of what government and opposition is eventually formed, there are reasons to expect progress. Family Carers Ireland will continue to work to try and ensure that these pre-election commitments are translated into priorities in the next administration’s Programme for Government.

 

 

National Carers Convention

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Our first National Carers Convention of 2016 will take place on Saturday 23rd April 2016 in the Ashling Hotel, Dublin from 10.30am to 1pm followed by lunch. Every group across our network is encouraged to send 2 representatives from your local group to participate and feedback on the topics of discussion.

Items on the agenda include:

  • Presentation from a family carer who is caring for a loved one with mental health difficulties outlining the specific challenges that this group of family carers face
  • Launch of new groups constitution and handbook for FCI
  • Merger Update
  • Progress report and update on the work of the National Carers Strategy monitoring group/Q&A session
  • Census 2016 – Make your mark with Q22

We look forward to seeing you all on Saturday 23rd!

National Carers Strategy Monitoring Group

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The National Carers’ Strategy Monitoring Group was established in 2013 to oversee and drive delivery of the national goals contained within the National Carers’ Strategy (NCS) and to do so through meaningful and positive engagement with the Government Departments and statutory bodies charged with responsibility for implementing it. The Monitoring Group is made up of representatives from Family Carers Ireland, Care Alliance Ireland and most importantly family carers and former family carers. The Groups work is focused on three distinct areas:

  • Scoring Progress: We use Governments annual progress reports to performance monitor the implementation of the NCS and assign ‘verdicts’ to each of its 41 actions (Objective Achieved, Good progress, Initial Progress, No Progress, Regressive)
  • Identify Policy Priorities:  Identify additional way in which objectives can be achieved and which will have maximum impact for family carers.
  • Engagement with Government Departments: Meet and work in partnership with Government Departments in the implementation of the NCS and ensure family carers have the opportunity to inform and drive Strategy actions.

The NCS, published in 2012, signalled Government’s commitment to respecting carers as key care partners, and to responding to their needs across a number of policy areas. At the time of its publication, Government warned of the need to be pragmatic in terms of the limited financial resources available to deliver the Strategy, but promised that as Ireland’s economy improved so too would the level of investment allocated, and that departments would be given the opportunity to revisit the Strategy and propose additional actions. Family Carers Ireland is proud of the progress that has been achieved to date with little or no additional spending.

We acknowledge the spirit of partnership that has been shown by Government departments in working with the NCS Monitoring Group in implementing very practical changes aimed at better supporting family carers. While there has been progress, it has been limited by the lack of ring-fenced funds. Family Carers Ireland believes that the vision set out in the National Carers’ Strategy holds good; however, many of the cost-neutral actions have become dated and offer little opportunity for progression. We are therefore calling on Ireland’s new Government to commit to adequately fund a renewed Carers’ Strategy setting out a clear action plan for 2016-2020.

The full National Carers Strategy can be viewed here.

Our full scorecard for the second progress report, with detailed comments and assessment, can be viewed here; a summary of our scorecard is available here.