Carers newsletter - edition no.13

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Welcome to the latest edition of our carers newsletter, providing carers and relatives with information on the support available within the Trust and the county. 

Vaccinations for carers

Carers can register to receive their  COVID0-19 vaccination via the Lincolnshire County Council website. Please go to www.lincolnshire.gov.uk/support-carers and then click on ‘COVID-19 support for carers’.

Carer Passports

We have developed a carer passport to help support and inform carers of those accessing LPFT services.

For more information email lpft.carers@nhs.net

Carers Lanyard and ID cards

To accompany our carers passport we now also have lanyards and carer ID cards that you can use when visiting your loved ones and liaising with staff.

Email our carers email address above to get one sent to you.

Carer Champions in Acute Services

We are delighted to share with you that we have extended the trial until March 2022 for the two new carer champions in acute services at LPFT. These carer champions are dedicated to supporting carers of patients across our acute wards of Connolly and Charlesworth.

 

“I can’t tell you how long ago it was that I was asked if I wanted to join the Carers Council. When you’re a carer the days seem to merge into one another and time seems to lose much of its meaning but I do remember wondering what exactly the carers council was and whether there would be any real benefits to being a part of it.

In my experience most committees or groups involve lots of talking with very little to show for all the hot air but I knew that was a generalisation and the opposite can also be true so I thought about it some more.

My husband was diagnosed with Young Onset Dementia in December 2017 and it wasn’t a pleasant experience. In the aftermath of the diagnosis there was no support and for a very long time we struggled through, picking up information as and when I discovered it. I decided that being involved in something like this might help other people avoid what happened to us and I also thought it might give me something to occupy my brain which wouldn’t be a bad thing.

I said ‘yes’ then and prepared for the first Teams meeting with no expectations whatsoever but thought, if nothing else, I’d meet new people and find out new information. 

So what can I tell you about the council? Is it somewhere people go to talk but not achieve? Is it something that meets for the sake of meeting and ticking boxes? I’m happy to tell you it’s neither of those things.

We meet once a month and have the dates of those meetings up to and including June 2022 so we can plan and try to keep diaries free. Information is sent out at least a week before each meeting, an agenda is set and stuck to, guests are invited to talk to us about relevant services, our views are taken into account and, most importantly, any decisions taken at the meeting are acted on before the next time we get together. 

In the months I’ve been a member of the council we’ve produced leaflets of our own, we’ve had input into information given out by services, we’ve given our opinion on existing services and I really feel we’ve made a difference to the experience of service users and carers. I’ve also learned that I’m not the only carer in the world, that there are others living a very similar life to mine.

One of things that’s really stood out for me is the way the meetings themselves have changed in response to the needs of the carers involved. Until very recently we met from 3pm to 4.30pm once a month but frequently there were only two or three carers taking part. Then came a request for an evening meeting so we tried it and discovered that far more carers could be involved if we held the meetings in an evening so they were set for 6pm to 7.30pm each month. At the first of these there was a discussion around how difficult it was for us to be ready so early and the immediate response was to change the times. The plan now is to meet 6.30pm to 7.30pm. The meetings will be shorter but the council will be far more accessible and give many more of us the opportunity to make a difference.

If you would like to join the Carers Council then email our dedicated email address lpft.carers@nhs.net.”

 

Visiting on wards

If someone you are caring for is on one of our wards, please contact staff on the ward and ask about the specific arrangements they have in place to facilitate you seeing and having contact with your loved one.

One to one support/individual advice

We have a dedicated carers email address  which you can email any questions, queries or concerns to during this challenging time. You can also contact us if you would like a one-to-one call, even if it’s just for a chat! You can make contact on lpft.carers@nhs.net.

Lincolnshire County Council - general support for carers

Lincolnshire County Council (LCC) has a general advice page for carers which has information on a range of topics, including benefits and entitlements, emergency care planning and carers assessments.

More information can be found online at www.lincolnshire.gov.uk/support-carers

Latest guidance for carers from LCC can be found at                                 

https://www.lincolnshire.gov.uk/downloads/file/3907/carer-guidance-covid-19-final-updated-22-04-20

North East Lincolnshire

There is now a single point of access (SPA) in North East Lincolnshire which includes Young Minds Matter.

You can call NAViGO on 01472 256256, option 3 for 24/7 mental health support in North East Lincolnshire. For young people’s mental health support, call Young Minds Matter 01472 626100 (for out of hours support you can also call 01472 256256 option 3).

North East Lincolnshire - Young Carers Assessment

The link below gives outline information for young carers and adult carers in the northeast Lincolnshire area. It also contains a telephone number which to enable people to contact the Carers Team and request an assessment.

Information for The Young Carers Team can found at www.carerssupportcentre.com/nel/young-carers

"To work, or not to work? That is the question."

“Yes, I’m misquoting Shakespeare terribly. But if he’d been a carer I’m sure he’d agree we ‘suffer the slings and arrows of outrageous fortune’ - it’s why we take on the role of carer in the first place, ‘to take arms against a sea of troubles’ and smooth those waters for our loved ones. But enough of Hamlet and onto a tale that doesn’t end in tragedy. Every one of us has a different story to share and each of us face our own individual challenges and circumstances so it’s difficult to know how to approach this article. I can only write about my own experiences in the hope that by sharing it you know you’re not alone and there are choices even if they’re tough ones.

I was a teacher at a junior school when I became a carer. My daughter had been battling with her mental health from a young age and my husband was diagnosed with Multiple Sclerosis. I loved my job and was passionate about it. In those early years it was also my refuge, a break and a distraction from my caring role. Interacting with colleagues made up most of my social life and my job gave me a sense of self and achievement beyond my caring role. 

If I’m completely honest I didn’t see myself as a carer, I was a wife and mother who had loved ones with ill health and I was stepping up to the plate to bat for them. But I did have to become more organised and efficient so I could juggle the two roles and took the opportunity, during a staff restructure, to reduce my hours to three and a half days a week. A part of me felt proud that I was managing it all. I was working smart.  My recipe worked well for a few years but my caring role changed over that time. My husband and daughters’ conditions deteriorated and more of my time was needed to support them. Thrown into the mix was the added ingredients of my own parents declining health and I was suddenly juggling even more responsibility. My son used to joke that we were the only people who knew what the plural of crisis was.

It wasn’t until my dad was diagnosed with terminal cancer in 2013 that I had my first wake up call. Mum was nursing dad at home and needed my support, end of life care is intense and difficult to manage. I was losing my dad; my daughter was under CAMHS and I was living with the constant fear she wasn’t going to make it. At the same time my work responsibilities increased, I was working through every break to keep on top of my work load or making/fielding calls for those I cared for. The lines between both roles became blurred, I was surviving on about 5 hrs of sleep and working from the moment I woke to the moment I fell asleep. 

Work knew I was struggling, I had always been honest about my responsibilities at home. I was stressed, anxious and overworked which led to me making a mistake at work. A disciplinary hearing followed. My confidence was knocked but I continued on for a number of years before I recognised that I needed to make some changes. I didn’t feel happy at work any longer; the relationship had soured. But I was the sole earner in the family and I wanted to be a good role model to my children.

I was in a bad relationship with work but didn’t recognise the signs. I’d always gone above and beyond in everything that was asked of me. I’d juggled my caring role around my work hours and if I had to take time off for appointments I made up for that by coming in on my days off. I didn’t know about carers rights and reasonable adjustments and no one pointed them out to me.

By 2017, my husband’s Mum was rapidly declining with physical health and dementia and his dad was showing signs of early dementia himself. I spent the 5 weeks of the school holidays, organising care, sorting finances, putting in place support for my father in law, clearing out their home and making it more manageable and well the list goes on. By the time I returned to school I was exhausted and quickly realised I was in no position to teach to the standard the children deserved.

I spoke with work, went to the GP and was signed off with stress and anxiety. Work organised counselling for me and it was the best thing they could have done. It’s my counsellor that turns my life around, she points out the level of responsibility I have and how work has not made appropriate allowances. She gets me to think about my husbands’ condition and how it will continue to deteriorate and encourages me to think about how I want to spend these years with him.

I don’t rush to make any decisions as I now have time to think things through. I research my options, have a cares assessment and finally accept that that is what I am. I look closely at our finances and save as much of my salary as possible. It’s on an absence review with work that I finally see the relationship isn’t salvageable. When I discuss my work load and ask for some adjustments I’m met with a wall of resistance and the suggestion of taking a much lower paid post. It feels like a threat not a supportive move. When I walk out of that meeting I’m in shock which quickly turns to anger followed by hurt. Its then that I know it’s over and it’s time to walk away.

Within a couple of weeks, I’ve talked over my choices with my husband, reduced our bills and expenses and researched any further support we can receive. I hand in my two months’ notice, apply for carers allowance and take just over two thirds of a loss in income. It’s going to be tough but guess what I’m   happy. I have time, time for the most important job of all, caring for my loved ones.”

Older People & Frailty Divisional Support

If you would like information, support or advice about your caring role, please contact our Older Adults Carer Lead, Jules Weldon at lpft.oacarers@nhs.net

Visiting on the wards changes regularly as COVID safety guidelines are amended by the Trust.  Please speak to the ward staff before planning a visit.  If you are caring for someone in our Older Adults Inpatient Services and would like to send messages, letters or photographs, these can also be sent to lpft.oacarers@nhs.net and we will ensure they are printed and given to your loved one.  

LPFT Dementia Support Service

If you or someone you know has been diagnosed with dementia or mild cognitive impairment, our Dementia Support Service can offer you information and guidance on how to live as well as possible with the diagnosis.  We can provide information and guidance relating to the diagnosis, as well as supporting carers/ loved ones with how they can support the person living with the diagnosis as well as maintain their own wellbeing.

If you would like more information about the service, email lpft.dementiasupportservice@nhs.net or call our Single Point of Access Contact Centre on 0303 123 4000 where you will be put through to the relevant team.

 

Below are a list of other contacts which you may find useful in supporting you with your caring role.

Age UK - Providing support for older people and their carers.

Tel: 03455 564 144

Web: www.ageuk.org.uk

 

Alzheimer’s Society - Providing support for people with dementia and their carers.

Tel: 01522 692681

Web: www.alzheimers.org.uk

Email: lincoln@alzheimers.org.uk

 

Total Voice - Providing Advocacy for Carers

Telephone: 01522 706580

Text: 07860 018887

Email: TVL@voiceability.org

 

The Silver Line - A free 24/7 confidential telephone support for Older People.

Telephone: 0800 470 80 90

Web: www.thesilverline.org.uk

Email: info@thesilverline.org.uk

 

Often, young carers supporting someone with poor mental health are not recognised as such, yet trying to help someone who may be really distressed can be one of the hardest things to do. Young carers may be offering compassion, empathy and encouragement to parents struggling with their mental health by talking to them, listening and trying to understand their problems. Often, young carers worry about the person they care for while they are at school, making it hard to concentrate. They may be unable to spend time with friends and feel lonely and isolated. Young carers supporting someone with poor mental health are not as readily identified as those young people who carry out more practical care.

Example of support as described by a parent:

"I get really paranoid and panicky and sometimes find it very difficult to leave the house to get her to school. I have panic attacks a lot if I am out or in a shop and she always helps me. She has to help me with the shopping at the local shop as even this panics me. She helps me read and write things and makes sure I know when I have appointments. Contact youngcarers@lincolnshire.gov.uk by email or call 01522 553275.

She is such a big help at getting me out of the door and as soon as I step outside thoughts just muddle sometimes."

Carers support

If you are aged 18+ and support a relative or friend with tasks such as washing and dressing, paying bills, transport, emotional support, health appointments, medication and domestic tasks, you can get help with your caring responsibilities. This can be accessed by arranging an initial conversation with the Lincolnshire Carers Service.

The team will discuss your caring role and any problems you are experiencing and then work with you to find solutions. There is a huge range of support that is available to unpaid carers within the county including information and advice, benefits support, regular newsletter and updates about events happening in the community, a Carers Emergency Response Plan (CERS). If the team are unable to resolve a problem during our initial conversation then a statutory Carers Assessment may be considered if your needs are complex and require more specialist and on-going support.

If you have not already accessed support in your caring role and would like to, you can contact lpft.carers@nhs.net for more information. If you would like to complete the referral yourself you can contact Lincolnshire County Council Carers Team 01522 782224

Here4You advice line for children, young people and parents

Lincolnshire children, young people and parents can contact the Here4You advice line for mental health and emotional wellbeing problems on 0800 234 6342 (24/7). More information can also be found at www.lpft.nhs.uk/young-people/here4you 

Spotlight on… Laura Suffield, Carer Leads Support at LPFT

My job is to work supporting carers across the Trust and is very varied and interesting. I am passionate about the importance of carers in their loved ones care and the impact they can have on their loved one living well.

I work one day a week in my Carer Lead Support role. I offer 1:1 support for carers who may need someone to talk to and a listening ear. I endeavour to signpost carers to a range of things that we offer within the Trust to support them; such as our carers education group which runs alternate Thursday evenings, our carers WhatsApp group which provides a platform for information sharing and peer support, and our carers email address.

I also organise the meetings for the Trust carer leads forum, the Trust staff carer forum and carer council meetings.

The rest of the week I work as a Participation Co-ordinator within the Trust trying to get as many service users, carers and families involved in shaping Trust services. This can be in the form of a steering group advising on new build wards design and layout; helping develop and co-produce leaflets for different teams and numerous opportunities for input are offered.

I also produce this newsletter which I hope you find both informative and useful.

You can contact the Carers team through our dedicated email address lpft.carers@nhs.net

You can contact the Involvement team if you would like to get involved through our dedicated email address lpft.involvement@nhs.net

We know that this is a difficult time for everyone, including our patients. It is especially important to keep in touch with family and friends. That's why we have launched our new postcard service for patients across LPFT wards.

Send a loved one a message using the details below and our ward staff will personally deliver it on your behalf.

Send your messages to... 

Email: lpft.carers@nhs.net

Call: 07966834977 (8:30am - 4:30pm)

Please include the full name and date of birth of the patient, along with the ward name. 

Do you care for a family member?

Do you need support and education?

Join our established group, online every other Thursday evneing! 

For further information on how to join, please email donna.bradford@nhs.net

Help for carers and relatives

Single Point of Access (SPA): 0303 123 4000

Mental Health Helpline: 0800 001 4331 (24/7)

Trust HQ: 01522 309200

Email: lpft.carers@nhs.net 

Samaritans: 0330 094 5717

Recovery College courses

Lincolnshire Recovery College offers free educational courses on mental health and wellbeing, and is open to everyone aged sixteen and above.

The courses are designed and delivered by people with lived experience of mental ill health,       qualified trainers, and health professionals.

Visit www.lpft.nhs.uk/recovery-college

Future editions

If  you have any articles for the next edition of the carers newsletter, please send them to Laura Suffield, Participation Coordinator, via email at lpft.carers@nhs.net

Thank you 

Thank you to members of our Carers Council and everyone who has contributed to this edition of the LPFT carers newsletter. 

We look forward to receiving more articles, information and stories for our next edition. 

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