Carers’ Gazette

News for Carers in Issue 43 - Autumn 2013

“Carers Day 2013”

The 2013 Carers Day was held on the 15th June at the Rudbaxton Contents Hall in Crundale near Haverfordwest. The theme this year was Page: ‘Prepared to Care?’ 3 A Day in the Life 7 Upcoming Events 8 Organisation News

14 Carers Measure 16 Poetry & Books 18 Young Carers ______If you would like to receive regular news via e-mail please let me know by sending a message to: carers@ pavs.org.uk or telephone 01437 769422 Newsletters are also available electronically at www.pavs.org.uk/ carers ______

We would like to hear Photos show Chris Martin - from you if you wish any Chair Hywel Dda HB , carer’s news to be Simon Hancock - County included in the Carers Councillor, Jenny Morris, Gazette. members of carers support The next deadline is services and carers January 2014. attending the event Please email articles with your pictures or send to: Prepared to Care? Carers Gazette PAVS Exploring the impact of caring on people’s lives Freepost SWC4881 36-38 High Street Haverfordwest SA61 2ZZ Carers’ Gazette Page 2 “Carers Day 2013” continued…..

Who do you care for?

Above is a summary of the report from over 2,000 carers surveyed nationally during Carers Week. The Carers Week partnership wanted to find out from the UK’s carers how prepared as a society we are and what could make a difference to carers’ lives and the people they care for. Prepared to Care? explored the impact that caring has on people’s lives. In particular it focused on carers’ relationships, career, finances and health and well-being. (For more information see http://www.carersweek.org).

Our Pembrokeshire event was well attended with plenty of information stands from local support organisations, and healthcare checks provided by the stroke nurses. Complimentary therapists were available in a separate room to provide a much needed session to relieve the stress of the carers who attended. Following a delicious and plentiful high tea, some light relief was provided by the line dancing club. After their very impressive display members of the audience were invited to come and join them. This was taken up by some intrepid carers and stall holders who enjoyed the experience very much. There was then time to spend meeting each other in an informal setting. Having a chance to meet other carers or find out useful information seemed to go down well from the feedback we received. Carers’ Gazette Page 3

A day in the life of Tina Norman, Carer and Cared for

Background I was a SEN teacher, married with 2 young children and living in Devon, when I contracted viral meningitis in 1994 and sustained moderate brain damage from this. I became ill with ME too at this time, and my husband, who was in the RAF, had to leave his job in order to care for me and the children. I was bed-bound for 4 years, then ‘couch’ bound for a further 4. Later my husband became ill with heart problems, diabetes and cancer, my son was diagnosed with Asperger’s Syndrome, and following this we realised that my husband also had Asperger’s Syndrome. My daughter also had asthma, eczema and other problems, so we became a whole family of carers! Unfortunately my husband died 2 years ago after losing his battle with cancer and it was after this we moved to Pembrokeshire to be nearer my daughter.

Who do you care for? My son, John, now 20 who has Asperger’s and he cares for me too with regards to my ME and following the second meningitis infection. I have cared for my father in the past and my husband of course. I am currently altering my house so that my mother can come to live with me then I will be caring for her too.

What is your usual daily routine? In many ways I do not have a typical day, although I do try to keep to a routine for the sake of John. We keep mealtimes constant and if there are any changes happening I do a countdown to keep reminding him, which helps him cope, even with regards to what he eats and the way it is served. He gets agitated with changes and he has found it very difficult having the workmen in the house doing the alterations. In some ways he is like a normal teenager, playing on his computer games and grunting by the way of conversation, but in others he needs a lot more support. I also do some tutoring on the LAM courses (Looking After Me) for carers (editor’s note—see page 4 for further information on this).

What support do you have? I do have support from John; he helps in practical ways by doing the heavy housework and sometimes, if I am feeling worse, he helps me dress (although there’s only so much you can ask a teenage boy to do!). Very importantly, as I have frequent blackouts, he has to know when he should call an ambulance – he has a checklist to refer to. However I have seen a gap and decided to try to fill this by setting up 2 new support groups. The first one is for parent carers, and I have had the first couple of meetings at my house. This is for parents of grown up children who have disabilities as I have found that there are particular problems to be overcome when they pass the age of 16 or 18. The other group is an ME one which is again is for people who suffer from ME or CFS (Chronic fatigue Syndrome) and their carers.

What has been your worst experience? This was having meningitis for the second time, being carried off in an ambulance and seeing my son’s face. It was such a worry that he would not be ok – he did not call for help and I could not speak. I do carry a carer’s card but in Carers’ Gazette Page 4

A day in the life of Tina Norman continued…………….

the panic to get me to hospital I did not have my handbag with me. I found the experience very difficult in hospital as they did not understand about ME, Meningitis or about carers. Luckily my neighbour saw the ambulance and called my daughter.

What has been most helpful? Having the carers information pack with up to date information in it, having emails about items of interest to carers and the PAVS and PCC website. I especially like having a named person that I can contact if I need to and a lot of carers do not have access to the internet so it is especially important to have a phone number as well. I found the booklet ‘Say I’m Fine and Mean It’ very helpful too.

What would you like to see changed to make it easier for carers? More education about carers. I would like to see people in the medical profession really understanding what it means to be a carer, what they are going through and to support them before they reach breaking point. I would like to see the ‘Stress Management’ courses that are offered to patients being adapted for Carers – it wouldn’t be that hard.

What advice would you offer other carers? Keep fighting, don’t give up, ask for help. Sometimes you have to swallow your pride and ask for help, so don’t leave it until it is too late. Be proud that you’re a carer and give yourself a pat on the back.

LAM—Looking After Me Course for Carers

What is the LAM course…………

The Looking After Me Programme – Run by Carers for Carers.

This is a 6 week, 2.5 hours a week programme for anyone caring for someone who has a long term health condition. The emphasis of this programme is to give carers the opportunity to learn some skills to enable them to take care of their own health whilst caring for someone else, this encompasses relaxation techniques, communication skills, a range of cognitive techniques, working with health and social care staff and so much more. The project is now able to support carers with replacement carers costs.

For more information contact Sarah on 01554 779507

The next course starts on Feb 20th 2014 in Pembroke Dock every Thursday from 10am—12.30pm for 6 weeks

Tina Norman is a tutor on the above course and will be available to talk to anyone interested at our Carers Health Fair on 9th October. Carers’ Gazette Page 5 A day in the life of Mike James

Pembrokeshire Carers Champion County Councillor of St Dogmaels ______

A typical working day for me would be leaving home between about 8 o’clock for a 10 am meeting in either County Hall in Haverfordwest or Llanion Park in Pembroke Dock – the headquarters respectively of Pembrokeshire County Council and the Pembrokeshire Coast National Park Authority (the two organisations of which I am a Member). Most meetings would be finished by 12.30 pm to 1 pm.

I then spend time talking to officers, answering emails or organising site meetings within my Electoral Division. The three main villages within my Division are St. Dogmaels, Nevern and Moylegrove.

I attend an average two to three evening meetings a week. Saturdays are filing days and dealing with the paperwork.

When I work from home, I visit residents. I will walk the village to meet and talk to people.

I also visit the vulnerable - residents who have lost loved ones or have returned home from hospital.

How will I carry out my duties as Carers Champion?

I admit I have so much to learn. I need to meet so many people. This is the only way I can improve my knowledge about carers. I work closely with my County Council colleagues on the Cabinet and Council officers.

In this respect, working with Joy James, Carers Strategy Co-ordinator, for Pembrokeshire County Council has been very helpful.

What is the best part of my job?

That’s easy to answer - working with people. I like to carry out my role to the best of my ability. If I can’t help, then I will find the best person who can.

The biggest problem I encounter is time.....not only is there not enough of it in the day but things Mike attended the Carers Week event in don’t seem to happen fast enough. Quite rightly June where he had the opportunity to there are procedures but sometimes it can be meet some of the carers and the frustrating. organisations who supported carers with information on the day. Carers’ Gazette Page 6 Meet Sally Star

Hello, I’m Sally Star and I am delighted to have recently joined Hywel Dda Health Board as their new Carers Measure Project Development & Training Officer. My role is to train staff to identify carers and understand their needs whilst supporting the Carers Strategies () Measure 2010 and the Hywel Dda Region Carers Measure Information & Consultation Strategy (2012-2015).

I will be working to raise the profile of carers and encourage flexible carer-centred services whereby carers feel empowered and a valued partner in care. Therefore I would like to spend some time attending carers groups so I can gain a better understanding of carers experiences within the Health Board and work together to identify any gaps in service content and delivery.

I am a Registered Nurse and as such have worked within Hospital, and School settings and my previous post was with Pembrokeshire County Council as the Manual Handling Co-ordinator. Naturally I have had much contact with carers in a professional capacity, however it is my own experience of being a carer to my daughter that helps me to truly appreciate this unique and significant role. If I can help Hywel Dda staff to recognise a carer and direct them to some much needed information or service, then I might have made a difference to their day. However big or small that may seem, I know how important that can be. For more information please contact me on [email protected] or 01437 773834

Sally Star is also the Vice Chair of the Pembrokeshire Moving & Handling Forum. Our members are from the Independent Sector, Local Government, Local Health Board and Charitable Organisations. The aim of the Forum is to encourage joint working across the County to promote high standards of moving & handling within care & educational settings. The group meets quarterly and we enjoy sharing up-to-date knowledge, training and best practice. We have been active since 2007 and we would very much like to open our membership out to all carers would benefit from information & practical help to stay well and prevent injuries. Please feel free to join us at our meetings. For more information please contact Sally or Jo Swift (Secretary) on [email protected] or 01437 764720.

Carers provide invaluable help and assistance to their children, friends, relatives, and partners, but what happens when their work leads to back pain, compromising their ability to care? Back pain is endemic among carers: a 2011 survey found that 70% of carers experienced back and shoulder pain This issue seriously affects the quality of life of those who should be most valued in our society, as well as impacting on their caregiving work.

During BackCare Awareness Week ‘Caring for Carers’, Hywel Dda Health Board & the Pembrokeshire Moving & Handling Forum would like to offer free information, advice and safe handling techniques to carers. If your carers support group would benefit from some friendly informal short sessions then please contact Sally Star on [email protected] or 01437 773834

Carers’ Gazette Page 7 A date for your Diary - Carers Rights Day CARERS RIGHTS DAY “RIGHTS, ADVICE, SUPPORT”

This year Carers Rights Day is taking place on Friday 29th of November and the theme is ‘rights, advice, support’ focusing on ensuring that carers understand their rights and get access to good quality advice that can support them to care.

Carers Rights Day aims to make carers aware of different kinds of practical support that could support them to care so this year our organiser’s handbook has more information on how different kinds of technology can benefit carers by; monitoring things to provide the peace of mind that lets a carer get a good night’s sleep or to juggle work and care, or enabling carers to connect with other carers and access support and information online.

At the event on the 29th November in Johnston you can hear from organisations about help that is available and meet with carers who will exchange their experiences and give tips.

Friday 29th November 2013 from 09.45 am to 3:00 pm At Johnston Institute, 4 Hayston Road, Johnston, Haverfordwest. “Getting help in tough times”

09.45 am registration, coffee and Setting up information displays 10.15 Welcome Please note: This agenda is Presentations around the theme: subject to change—keep an – PCC Director of Adult Care eye out for posters and –Carers assessments – What do they mean for me? flyers nearer to the date just – Advice on Benefits for Carers to check – Hywel Dda Health Board Investors in Carers - An opportunity to influence the Pembrokeshire Carers’ strategy before it is written. – Hywel Dda HB Carers Lead – Update on Information & Consultation strategy – An update on the first 12 months. 12.30 pm Lunch 1.00 pm Individual consultations at information stands Therapy taster sessions for carers More to be confirmed 3.00 pm Close

We hope you can attend, bring a friend if you wish. We can help with travel and respite / replacement care costs. Transport A combination of shared transport and Cars4Carers transport can be arranged. Please indicate if you need or can offer transport. I can offer transport to other carers in my area, car spaces …………………. I need transport from ……………………….. Replacement / Respite care We can reimburse transport or care costs incurred on submission of a receipt or an invoice. Please give an indication in advance of the expected costs £………………

Carers’ Gazette Page 8

Do you care for someone with

Dementia? Carers Education Programme

A programme consisting of four half day sessions run once a week for four weeks. The aim is to help carers in their caring role by providing knowledge, support and some coping strategies.

Week 1 – Introduction to Dementia An opportunity to share caring experiences with other carers in a similar situation. Gain an understanding of what is happening to the person with Dementia and how they may feel about it. Learn how physical damage can cause everyday difficulties. Learn how Dementia can impact on communication.

Week 2 – Behaviours we find challenging Understand that all behaviour is a form of communication. Recognise trigger factors that may lead to behaviour we find challenging. Look at strategies to assist in coping with these behaviours.

Week 3 – Changing Relationships Understand the way Dementia affects relationships. Learn some coping mechanisms and strategies to help cope with the changes ahead.

Week 4 – Meaningful activities Gain an understanding of why activities are important for someone with Dementia. Explore activities that could be used to ensure the person with Dementia is involved in everyday life as much as possible.

Sessions will be held each week on Thursday 3rd, 10th, 17th, and 24th of October

All sessions run from 1.00pm to 4.30pm at The Meeting Room, Picton Centre, Freemans Way, Haverfordwest SA61 1UG

If you think you would like to attend please speak with Katherine, the Dementia Support Worker, to reserve a place, or call 01646 692 329.

Singing for the Brain

This happens at the Rudbaxton Hall in Crundale on the first Monday of the month at 2-4pm and at Foundry House (21C) in Pembroke on the first Friday of the month, from 2-4pm Singing for the Brain - Join us at our fun and stimulating Singing for the Brain sessions for people in the early to moderate stages of dementia, and their carers. Carers’ Gazette Page 9

FREE Manual Handling Training and Development Courses - Sponsored by Care In Hand, The Laurel House, Wooden, Pentlepoir, Saundersfoot, Pembs SA69 9DY www.careinhand.co.uk. We at CIH believe regular training is an invaluable tool both for our Carers and Clients. Our aim is that all our Carers update their skills on a regular basis as Client needs often change very quickly. It is paramount that our Team are updated with training methods therefore we offer a large number of bespoke training courses. CIH are offering a number of free training places on their training programme to unpaid Carers within the Three Counties. These courses are run every 3 weeks. If you visit our website you will find a list of available courses. If you are interested then please apply by email to [email protected] or call us on 01834 811333 where we will be happy to help.

Clynfyw Care Farm

We have two big projects running over the autumn. One is our Community Apple Juicing Scheme. If you have any apples and would like them juiced, let us know and our team will come, pick, juice and bottle them for you. What a service! The second is the Wheelie Good Idea, in which we refurbish old wheelchairs and mobility aids, and send them off to Africa. The picture on the right shows Jim Bowen with Joshua Weatherburn, who designed our new logo, and the picture below shows Sam Warden and the Value Independence Saturday Club who helped us fill the container. The Saturday Club runs every second Saturday, to great success! We are having a sponsored One Mile Wheel across the farm on Saturday the 28th September to help fund this project. Wings Over Pembrokeshire are played, there will be a barbie (with Clynfyw sausages), a mini-craft fair and tractor rides... You’d be most welcome to get involved. Over the winter we hope to start up a new soup making enterprise and also a Community Gardening Round working with the Red Cross. If you would like to get involved in either, please let us know. For example, if you’d like your garden tidied on a regular basis, that’s what we are here for! Please let us know!

North Carer’s Support Group

The group meets from 10.30 till 12.30 on the second Friday of each month, at Clynfyw in Abercych SA37 0HF, near Boncath. If you are living in the North of Pembrokeshire please feel free to join. There is the added bonus of having an occupational therapist available too. There is a lot going on here and we would welcome your involvement. Please come along and have a look. For further details or directions ring Jim Bowen at Clynfyw on 01239 841236, mob 07980290522 www.clynfyw.co.uk [email protected] or have a look at our film on You Tube - search for Clynfyw Film 2013. Carers’ Gazette Page 10 New Carer’s Services

Community Voice and Outreach

From May 2013, Crossroads Mid & West Wales is very pleased to be part of three exciting new projects (two of which cover Pembrokeshire) funded by the BIG Lottery Fund in Wales.

In Pembrokeshire and Powys, Crossroads will be helping to deliver projects funded by the Community Voice programme as part of a consortium of voluntary organisations led by the local county voluntary councils. Pembrokeshire Association of Voluntary Services (PAVS) is leading Stronger Communities: Better Services and Powys Association of Voluntary Organisations (PAVO) will be leading One Powys – Connecting Voices.

Crossroads Mid & West Wales will be working to ensure that the voices of carers, particularly those who are seldom heard, are listened to by decision makers and acted upon, to improve the lives of carers and those they care for.

Both projects aim to empower people to speak out to influence the decisions that affect their own lives and provide an opportunity for people to become more involved in developing their own ideas and solutions to meet the needs of their communities.

Hywel Dda Health Board and Crossroads Mid & West Wales will be working in partnership to achieve some of the aims of the Carers Strategies (Wales) Measure in Pembrokeshire. The Health Board is fully supportive and involved in developing the Carers Voice project in Pembrokeshire and helping to support unpaid carers throughout the county.

If you are a carer living in Pembrokeshire, or know someone who is, and would like to know more please contact me. I’d like to hear from you about your experience whether it’s about the access to information, emotional or financial support or any other issue you’d like to address and talk about. The project is designed to give you - the carer - a chance to share your ideas and views on how to improve the services you and the people you care for receive so that we can work together towards making positive changes.

Ingrid Bernathova, Project Development Officer on 01437 764639 or email [email protected]

Carers’ Gazette Page 11

Saturday Club

Crossroads At Crossroads Mid and West Wales we are promoting our Saturday Club which runs in Wintern, Fishguard every other week and Portfield Activity Centre, Haverfordwest every Provides a week from 10 am until 4 flexible, high pm. quality respite This allows carers a free service for day whilst their cared for those caring at home is being well looked after. The club is available for clients who suffer with dementia, memory loss and related symptoms. We offer support on Saturdays at Wintern, Fishguard every week from 10am—4pm. Saturday club is for There is a small £5 fee clients suffering with memory loss, dementia or cognitive impairment problems. There is a small for people attending to charge of £5 for lunch and various activities throughout cover lunch. We currently the day. have spaces in both our

**COMING IN SEPTEMBER**: Milford Haven Satur- clubs. day Club at Havenhurst. Please contact Crossroads Haverfordwest Office on 01437 764639 for more If you are a carer, information. Crossroads Care scheme can offer you support. We provide a wide range of care services tailored to individual needs, to people of all ages and whatever health condition - home based or in activities outside the home. (home-based respite; group day care; therapeutic activities for people with dementia; an emergency response care service and support to children with complex care needs). Not all services are available in every area. Our services are available during the day, evenings, nights, weekends and bank holidays. Many of them are provided free of charge, via referral from health or social services, or you may choose to pay for our services privately. Sharon Houghton, our Care Manager, is available to come and talk to whoever needs more information - contact: Rebecca Parry Admin Assistant, Tel 01437 764 639 www.crossroads.org.uk or email [email protected] Carers’ Gazette Page 12 THE ROWAN ORGANISATION Supporting Independence Through Choice Cefnogi Annibyniaeth Trwy Ddewis

What are Direct Payments? Direct Payments are cash payments made to individuals who have been assessed as needing services, in lieu of social service provisions. Most people who already receive social services from their council have a right to Direct Payments. They can use the money to arrange services in order directly to meet their social care needs.

The reasons why people opt for Direct Payments vary. Some people find that services provided by the council aren't flexible enough to meet their needs, or that they lack continuity. They find, for example, that they can't always be provided at times that suit them. With Direct Payments, they decide how and when their support is delivered and by whom. Direct Payments offer flexibility and choice to individuals by allowing them to make their own choices about their lives. People of all ages can purchase care for themselves that better suits their individual needs. The assessed person can use Direct Payments to employ people who report straight to them. Or they can use the money to contract an agency where the agency will be accountable to them and not to the local council. They can also use a mixture of these two solutions.

To learn more about Direct Payments and the way in which the Rowan Organisation can support you, please contact our Information Team on the Freephone numbers of: 0800 783 8897 for Welsh Speakers 0800 783 1755 for English Speakers Or e-mail [email protected].

British Lung Foundation Information for Carers

Carers play an enormously valuable role in looking after people with lung disease. The British Lung Foundation have produced a new information booklet that highlights the support services and financial aid that is available to carers, how to look after yourself as a carer, and also useful tips on carers can help someone with lung disease better manage their condition through learning about exercise and diet. Chris Mulholland, head of British Lung Foundation Wales, said: “The British Lung Foundation recognises the huge contribution of carers in Wales to people with respiratory conditions. Carers play a significant role in a person’s journey though through lung disease - often sacrificing their own health and independence to care for a loved one. That is to be admired, but it is important that carers receive first class care and support of their own. We have a lot of support for carers. Including through the BLF web-community, and online 'webinars' giving information about caring for people with lung disease. The BLF’ PenPals’ support service also puts family, friends and carers in touch with each other for mutual support.

In the community our Breathe Easy groups are a useful resource for carers as well as for people with lung conditions. The group local to Pembrokeshire is our Haverfordwest group who meet on the fourth Tuesday of the month, from 2-4pm, at Haverfordwest Leisure Centre, St Thomas Green. Contact Matthew Collins 01792 455764 [email protected]

Carers can also call our Helpline by telephoning 03000 030 555 to talk to staff who are able to advise on what benefits carers may be entitled to. We have also recently launched our “Looking after someone with lung disease” booklet which is specifically for carers. It can be ordered free of charge or downloaded from www.blf.org.uk/Page/Looking-after-someone-with-lung-disease.” Carers’ Gazette Page 13

Support for Mental Health Carers

The essential part a carer plays in the life of the cared for is fundamental to one organisation in Pembrokeshire. Hafal is the principal third sector organisation in Wales working for and managed by people with serious mental illness and their carers. Hafal, meaning equal, recognises the vital role the carer plays in the recovery of anyone with a mental health illness. The organisation provides a support and advice service which any carer of someone with a serious mental health illness can access via a referral system. The methods of referral are through the General Practitioner, the Community Mental Health Team or by contacting Hafal directly.

Hafal understands the needs of each carer can be quite different and so offers support that is suited to their particular situation. From practical advice to a concerned and understanding home visit or telephone call the Carer Support Worker is available when needed. In addition whist providing help and support to carers within Pembrokeshire Hafal also campaigns and represents carers with regards to issues that impact upon their daily life. The access to practical information, advice and support can help the carer continue in their caring role and in so doing help improve their quality of life of both the family member with a serious mental illness and themselves.

For more information about the carer/family support service please contact Fran Wray at Hafal on 01834 844177 or email [email protected] or see our website on www.hafal.org/hafal/pembrokeshire. ‘Lights! Camera! Action! Hafal has run a campaign this summer called Lights! Camera! ACTION! Which will call upon services across Wales to deliver on the new Mental Health Measure and Strategy. In the past two years we have successfully campaigned for the groundbreaking new law and policy (arguably the most progressive in the world). Now these are in place it's time to turn words into action: hence Lights! Camera! ACTION! During the campaign service users and carers across Wales will produce their own film blogs which point local services and national policy makers to good practice in mental health service delivery across Wales – and flag up local deficits in delivery. We'll talk to camera about what changes we want to see in services as a result of the exciting new law and policy. Hafal’s VW microbus and a mobile studio came to Tenby on Tuesday 17th September and from this there are some great video blogs.

For more information look at https://www.facebook.com/pages/Hafal/131232186903160 for some interesting blogs from carers and service users or www.hafal.org/hafal/pembrokeshire. Carers’ Gazette Page 14

HYWEL DDA HEALTH BOARD Summer 2013 Carers Strategies (Wales) Measure 2010

The Carers Strategies (Wales) Measure came into force on 1st Jan 2012 and meant that Local Health Boards (LHB) and Local Authorities must work together to prepare and publish an Information and Consultation Strategy. The Strategy which has been approved by Welsh Government sets out how they will work together to provide information to carers and include carers in the arrangements made for those they care for.

Investors in Carers All the County Development Officers are engaging with the surgeries in the 3 counties, delivering trainings and supporting them to work on their folders for either gaining or revalidating the Bronze level certificate. The Silver level is also ready to roll out to those surgeries who wish to participate and the pilot for hospital settings is ready to commence with a cross section from Mental Health, Outpatients, Stroke Services etc For further information relating to the Investors in Carers Scheme do not hesitate to contact Pennie Muir [email protected]

Carer Aware E-Learning Project is now rolling out. The Carer Aware course has been designed to support these measures and will provide you and your staff, with the knowledge and understanding they need to identify and meet the needs of carers.

The Course has been funded from Carers Measures Funding and is available “free of charge” to the Mid and West Wales health & social care workforce in 2013/14. Developed in partnership by Cylix Ltd., Social Care in Partnership Mid and West Wales, Hywel Dda Health Board, Powys Teaching Health Board, the Carers Development Learning and Information network to meet the requirements of the Carers Measures HDHB Board Members receive their legislation in Wales, this course is a practical, e-learning certificates engaging online training resource that can be accessed whenever and wherever suits them. This is an excellent opportunity to up-skill your team or just to refresh their knowledge at no cost to your organisation, provided you provide health and social care services in Mid and West Wales. The production of an additional Young Carers Module is ongoing too. For further information on how to sign-up for Carer Aware training, please contact Martin Gillard, Business Support Officer via email martin.gillard@.gov.uk or phone 01545 574008. For further information on the HDHB contact Peter Llewellyn, Assistant Director for Strategic Partnerships on 07976-279391 or by email on [email protected]. Carers’ Gazette Page 15

Julie Campbell Pembrokeshire Investors in Carers Development Officer

Hi, my name is Julie Campbell and I have joined the PAVS team as Pembrokeshire’s Investors in Carers County Development Officer. I am also working as the Carers Development Worker in PAVS so Carers are my interest. I have also had personal experience of caring so I have an understanding of the impact this has on the family.

Based on the 2011 Census for England & Wales there are 15,195 Carers in Pembrokeshire, which amounts to 12% of the population and of these 30% are caring for someone for more than 50 hours per week.

My role is to support GP practices to gain and maintain the Bronze Level, which is an accredited award. Most surgeries attained the Bronze award but they need to be re-validated now. I am here to support them to achieve this and deliver training to the practice staff to refresh everyone about who is a Carer, gain an understanding of how that impacts upon their life, and signpost them to appropriate support.

Over the last decade legislation has been introduced to ensure that the rights of unpaid Carers are being included in society. More recent legislation has focused on Carers having a life outside of their caring role in terms of leisure and training as well as rights for working Carers.

The Silver level is also ready to roll out to those surgeries who wish to participate. The Bronze level version for Hospital Settings has been signed off and ready to be piloted – meetings are currently taking place with 10 identified sites.

For further information about Pembrokeshire Investors in Carers contact [email protected]

Flu Jabs As a carer you may be worried about getting the flu because it would affect your ability to care for the person you’re looking after. You may be able to get a flu jab because of this, or because of your age or your own health. The flu vaccine is available free of charge from your GP following groups:  Everyone aged 65 years and over.  Everyone aged six months or over who is in a clinical risk group.  People living in long-stay residential care homes or other long-stay care facilities where the infection could spread easily and put lives at risk (this doesn’t include prisons, young offender institutions or university halls of residence). People who are in receiving a Carer’s Allowance, or who are the main carer for an elderly or dis- abled person whose welfare may be at risk if the carer falls ill. If you’re not aged 65 or over, tell your GP if you receive a Carer’s Allowance or are the main carer for the person you are looking after. Explain your concerns for the welfare of the person you’re looking after if you should fall ill, e.g. if there is no one else who would be able to step in. If you have health problems of your own, your GP should also check to see if you fall into one of the risk groups. Carers’ Gazette Page 16 Book Corner

One of our carers suggested something new for the Gazette: Have you got any suggestions for our newsletter such as anecdotes, tips or book/blog suggestions.?If so send to [email protected] or post to Julie at PAVS.

To start us off, we have ‘The Selfish Pig’s Guide To Caring’ by Hugh Marriott. “This book is for those of us who have come reluctantly to caring for someone with a long-term disability and who secretly feel bad about our unwillingness. In a highly entertaining manner the author, himself a carer of his partner who has Huntingdon’s Disease, tackles the really difficult issues of “What if you didn’t care?", and “Tips which the experts don’t tell you”

‘Keeping Mum’ by Marianne Talbot When Marianne Talbot’s mum was diagnosed with Alzheimer’s disease, Marianne found it impossible to put her mum into a care home. Instead Marianne cared for her mum in her own home for five years, whilst chronicling her experiences in a blog for three of those years. The blog has now been published into a book called ‘Keeping Mum’. Heartwarmingly funny, frank and at times emotionally tearing, this book is a record of what it is like to care for a beloved parent whose mind is fragmenting.

Also have a look at the Saga website (http://www.saga.co.uk/care/visiting- mabel-blog-archive.aspx) Duncan McLaren's tender and compelling online diary about his relationship with mother, Mabel, who is now in a care home. Poetry

Taken (with kind permission of ‘M’) from a book produced by Pembrokeshire Mind. ‘M’ is a young carer who at 16 years old has used the written word to reflect on her feelings of her life whilst battling with her own depression.

What’s the true meaning of life? Are we really here for a reason? And if we are what’s the reason and why? Do we truly know this planet? Because no matter what there are secrets And how far are we willing to go to find the secrets? Are we willing to die? Or are we willing to let other people die for us? The days are long The dark gets closer and closer Nothing we can do Can’t hide or run Just pray, pray that we will survive another day And hope we don’t take life for granted Or the people we love So let the light come out Start a new day of a new life Carers’ Gazette Page 17 Some Resources for Carers If you are new to caring you may want some ‘first port of call’ suggestions for information and advice so I thought I’d compile a list of telephone helplines and websites.

Firstly there is the PAVS Carers Development Worker (that’s me - Julie Campbell) on 01437 769422. I can send you a carers pack and have a chat about what areas of support you need and signpost you to the experts, or suggest a carers support group in your area. Have a look at the PAVS website too under ‘Carers’ http://www.pavs.org.uk/carers. The Pembrokeshire County Council website also has lots of resources for carers http://www.pembrokeshire.gov.uk - look under social services then carers. Our Pembrokeshire Carers Information Sheets can be downloaded from both websites.

Carers Wales website and carers advice line: 0808 808 7777

Carers Trust and Carers Trust Wales http://www.carers.org Pembrokeshire Better Advice Better Lives

CAB The right advice can change lives The Better Advice Better Lives BABL Caseworkers aim to: project provides practical advice within the following areas:  Tackle the root cause of ill health

Anxiety often causes or exacerbates ill health  Benefit Application Forms Welfare Benefits  Save health service time Debt/Money Advice Patient access to BABL caseworkers leaves nurses, Housing doctors and other health care professionals with more Employment time to deal with health related matters Legal Family/Personal  Maximise income Consumer BABL caseworkers advise people on their benefit Council Tax entitlement which can make a real difference to their Child Disability lives The service is provided by Citizens  Extend access to advice Advice working in co-operation with health care professionals in BABL caseworkers in health care settings provide Pembrokeshire. It is funded by the advice for people who might not otherwise use Citizens Welsh Government Advice BABL Caseworkers hold appointment only sessions at the following venues:

Tenby Cottage Hospital Home visits can be arranged by (Monday & Wednesday) referral from a medical practitioner

Bro Cerwyn Psychiatric Hospital Contact the team on: 01437 763080 (Wednesday) Goodwick Medical Centre (Thursday) [email protected] Carers’ Gazette Page 16

Action for Children Pembrokeshire Young Carers Charter

A group of more than 30 Young Carers from Pembrokeshire Young Carers, Action for Children have created their own Charter of Rights to show what rights and freedoms they feel they should be entitled to.

Members of the group created the Charter in partnership with Investors in Care. It will ensure that all Young Carers receive an acceptable level of support and engagement from professionals, services and organisations in the county. It is estimated that there are 11,000 Young Carers who give up their own time and energy to care for relatives, friends or siblings across Wales. This includes approximately 860 children under the age of 18 that provide more than 50 hours of care a week. Of these children 240 are of primary school age.

The Charter was launched at the Action for Children Celebration Event on 21st May at Folly Farm The Charter is made up of 8 sections and includes; the right to be happy, the right to have respect and honesty from adults, and the right to play and have fun. One of the Carers behind the Charter is Amy, aged 17 she cares for her brother, who has a learning disability, and her father, who suffers from depression. She said, “I enjoy being part of Pembrokeshire Young Carers and I wanted to take part in making the Charter to let others know about the needs of Young Carers”.

The Pembrokeshire Young Carers will continue to work with Investors in Care to ensure that the Charter is used effectively and sent to doctors surgeries, schools and youth clubs across Pembrokeshire. It is available to download via the project website www.pembsyc.org.uk which was also deigned and laid out entirely by a steering group of 12 Young Carers.

Jan Leightley, Director of Children’s Services, Action for Children commented “ the Charter is particularly poignant as it allows Young Carers to give their own opinion on their rights and how they deserve to be treated. They play an instrumental role in their families’ lives by cleaning, cooking, caring for other children in the household and even administering medication- but most of all young carers don’t want recognition or reward. What the Charter shows is that they want time to themselves, to play, be with their friends and have the childhood they deserve”.

If you require further information regarding the Charter please contact Charlotte Phillips 01437 761 330 or [email protected] Carers’ Gazette Page 17

Action for Children Celebration Event - Folly Farm Fun Fair

On the 21st May over 300 children, young people and parents/carers attended the Action for Children Celebration Event at Folly Farm Fun Fair. The event was also attended by professionals including Heads of Service and Action for Children Executive Director.

The event was held to celebrate the good work and achievements of the Hawthorn Project and Pembrokeshire Young Carers. Presentations were delivered by young people of both projects and Nicola Francis (previous Head of Children’s Services) was a guest speaker. Young Carers launched their website www.pembsyc.org.uk, Charter and explained how the project had developed since commission and future plans. The Hawthorn Project delivered a presentation on all the different participation events that have been held over the last year including art workshops and an adventure residential. A big thank you was given to the 3 Amigos who support Action for Children events and fundraise for both projects. After formal presentations all participants had exclusive access to the rides in the fun fair and a meal in the Ploughman’s Restaurant. Plenty of photos were taken of the event and Sharon Harris (Curious Ostrich) filmed and interviewed participants to create a documentary; these are available to view on www.pembsyc.org.uk and www.hawthornproject.co.uk

Everyone who attended had a great time and the feedback was exceptionally complimentary about both services. Kate, Young Carer, aged 12 said, “Wow, I have loved every minute. The fun fair was great and I can’t believe how much Action for Children do in Pembrokeshire”. Peta, Engagement Officer from Pembroke School said, “Brilliant event that has showcased the work of Action for Children perfectly. All the Young Carers that I have bought have had a great time. The presentations were excellent”.

If you would like to know more about Action for Children and the services that are commissioned in Pembrokeshire, Wales or Nationally please do not hesitate to contact Charlotte Phillips 01437 761 330 or visit the project websites or www.actionforchildren.org.uk

Carers’ Gazette Page 18

Pembrokeshire Young Carers Art Work has been used to illustrate the 2013 Action for Children Impact Report. The report shows the amazing impact Action for Children services have had on children and young people over the last year. This report will be shared with many decision makers and influential people. It will be discussed in parliament, at party conferences and with commissioners. To see the report see the website www.pembsyc.org.uk

This newsletter is available on our website too at: www.pavs.org.uk/carers. If you would like to have this free newsletter for carers sent to you, please forward your details to Carers Gazette, PAVS, FREEPOST SWC4881, 36-38 High Street, Haverfordwest, SA61 2ZZ email: [email protected] or ring 01437 769422

Name ……………………………..………………………………………………… Carer: Yes / No Email…………………….……………………………………………………………………... Address …...……………………………………………………………………………………………… ……………………………………………………………………. Postcode …………………………… Telephone……………………………………………… Age Group: 0-20 21-30 31-40 41-50 51-60 61-70 71-80 81+ Ethnic Origin (for monitoring purposes): ………………………………………………………………..