Things I wish I had known before my loved one went to live in a care home

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Hearing feedback from relatives of those in care homes, we know that the process of moving into a care home can be a very isolating and upsetting time. There are many different emotional and practical aspects to consider.

Sometimes decisions and choices have to be made very quickly. Even when there is more time to plan, there can be smaller, unexpected issues that arise and make you think ‘I wish I had known this before my loved one went to live in a care home’.

This list was put together by people who attended our care homes forums in 2021 and 2022. It is a simple list of things to think about and comes from their experiences of having a loved one living in a care home.

There will be other things which we have not thought of and if you have more ideas and tips, please let us know and we will add them in.

Things to do

  • Provide more socks than you think will be needed – with recognisable patterns
  • Provide slippers – two pairs at least
  • Keep a supply of clothes at your home to top up/replace items as needed
  • Label everything – clothes and other items – with your loved one’s name. They may change rooms but not their name!
    – iron in labels for clothes and shoes in addition to the home’s own labelling
    – use indelible marker to write name or room number on TV remotes and ornaments
  • Check if you can you use your own bed linen and/or curtains
  • Ask if you can move in small items of furniture. A small side table that sits against a wall gives a nice focal point for ‘knick knacks’ without taking up space
  • Think about things that brighten a room immediately – pictures, trinkets, lamps, throws, cushions, but nothing too valuable or fragile in case of breakages/loss
  • Put a favourite picture of your loved one when they were younger in a prominent place
  • Buy a spare remote control for the TV
  • Think about a small Christmas tree and decorations. Ask family and friends to send cards directly to the person in the home so they feel part of the celebrations.
  • Supply games, picture books etc. to help with visits
  • Take scented drawer liners which add a nice touch to a room

Things to know

  • Labelling is very important but things will disappear, move around the home and reappear – both in and out of your loved ones room
  • Remember to say hello to other residents – you are in their home
  • Care home tea is usually very milky!
  • Care homes can be very warm – wear layers
  • Are meal times protected – is visiting not allowed at this time or can you visit to help your loved one eat?
  • Find out the arrangements for Christmas – are you able to visit or take your loved one out of the home?
  • Leaving your coat and handbag in the car or in the manager’s office, so that you can slip out, can make leaving after a visit less stressful for you and your loved one.
  • Does the home arrange ‘virtual’ visits – who does them and how is your loved one supported to interact with the call?
  • It might be reassuring to ask what a ‘typical day’ looks like for your loved one
  • Visiting can be upsetting so it can be an idea to have someone to talk to afterwards or have a relaxing activity planned

Get in touch

If you’d like to speak to us about your experiences of care homes, care home visiting, information about care homes in Northumberland, or would like to know more about our forums, please get in touch.

 

Download the list as a PDF

Your Care, Your Way – what you said

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Healthwatch England has published new findings, which show services are failing in their legal duty to provide accessible information for people with physical and learning disabilities.

As part of the Your Care, Your Way campaign, between March and May 2022, an online survey was carried out which heard from 605 people affected by communications challenges.

People being refused communication support

One in four respondents (28%) – including deaf, blind and people with learning disabilities – said they had been refused help when requesting support to understand information about their healthcare. This included information being provided in formats such as Braille, British Sign Language and Easy Read.

Not being given information in the right format affected people’s mental health and wellbeing (38%), meant they missed out on important information about their health (29%) or meant that they could not contact a service they needed (27%).

Respondents also reported that the quality of communication from NHS and social care services had worsened over the last two years. Two-thirds (67%) felt that the way health and care services communicate with them had gotten worse or slightly worse over the course of the pandemic.

Impact on people who have mental health conditions

It is not just people with sensory impairments or learning disabilities who are affected by this issue.

A fifth (22%) of those who reached out to Healthwatch to share their experiences identified themselves as having a mental health condition, such as depression or anxiety.

Of these people, 35% reported they rarely or never get the support they need to understand healthcare information or communicate with staff. The majority of them (70%) also said that the lack of information in a format they could understand further impacted their mental health and wellbeing.

Why we need better Accessible Information Standard

The findings come as NHS England (NHSE) is conducting a review of the Accessible Information Standard (AIS). The Government created this legal requirement in 2016 to ensure all publicly funded health and social care providers meet the information and communication needs of people who are deaf, blind or have a learning disability. Publication of this review is expected later in the year, with updates to be implemented by April 2023.

Earlier this year, Healthwatch England uncovered that many health and social care providers significantly failed their duty to ask about people’s communication needs and then act on this information.

They joined forces with leading disability organisations, including RNIB, RNID, Mencap and SignHealth, to inform the long-awaited review of the AIS. The coalition called on NHSE to take on board their recommendations, including stronger accountability across services to protect people’s rights to accessible information.

Louise Ansari, national director at Healthwatch England said:

“Our findings are a stark reminder that some of the most vulnerable people in our society are still excluded from access to healthcare because they communicate in British Sign Language or they need information in visual formats. And this is despite the fact that their rights to accessible information are protected in law.

“People’s right to accessible information should be based on their communication needs, not just on a diagnosed disability. For instance, people who have a mental health condition or are waiting for a diagnosis should have a right to request communication support in the same way as people who have a sensory loss or a learning disability.

“If people cannot get information about their healthcare they understand, this can have a significant impact on their mental health and can lead to them missing doctor’s appointments or taking the wrong medication, putting them in danger.

“As we are waiting for the review of the Accessible Information Standard, we strongly advise that NHSE and the newly created 42 integrated care systems ensure equitable access to healthcare for everyone.”

Find out more about the results of the accessible information survey

Get in touch

If you would like to tell us about your experience of accessing health and social care services in the last 12 months please get in touch.

Online Event – Asthma+Lung UK

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Join us on Friday 12 August, 1pm-2pm to hear a presentation from Nick Powell from Asthma+Lung UK.

In this free, online public event Nick will provide a brief overview of asthma, COPD, mesothelioma and other lung conditions.

We will also hear about the national and local support available from Asthma+Lung UK. There will be a chance to ask questions.

Register now and we will send you a link to join closer to the event: bit.ly/Asthma-Lung-event

 

This event has now passed.

autistic children and mental health services

Mental health services and autistic children

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Are NHS mental health services working for autistic children and young people?

We have been hearing from local families that some NHS mental health services aren’t working for them. To understand what is happening, we would like to hear about the experiences of as many autistic children and young people as we can. This includes children with a formal autism diagnosis, currently being assessed, or where there is an indication of autism. We want to know what is working well and what could be better.

Please tell us about your family’s experiences online, or by getting in touch in a way that suits you.

What you tell us will be included in a report to those who pay for and provide these services, along with recommendations of how services could be improved for children and young people. It will be anonymous and we will ensure you cannot be identified.

Read what Sarah, Ellie and Jennifer have to say and then tell us your story…

Parent Sarah says “For both of my children it took several years to get a diagnosis of ADHD and autism. Both have had issues with their mental health alongside their ADHD and autism. The delay in diagnosis impacted negatively on their mental health and both also experienced additional deterioration after Covid-19.

“Many different health and care services have been involved with my children, but these services are unfortunately not all joined up. Often referrals would be accepted for support but then discharged on the basis that other services were already involved or were better suited to provide support, care or treatment. When support has been received this is time-limited or specific to concerns at any one time leading to the process of needing to fight to seek help again later down the line.

“My children’s mental health difficulties have been seen as being ‘part of their autism’ rather than a separate condition that required treatment and help. This has led to difficulties and challenges getting the right support and most appropriate services involved for their mental health. Many people on the autistic spectrum have anxiety and mental health issues. This is not autism but the effect of having to adjust to the world around them and the many challenging situations they face.

“What has been most difficult is that every step of the way I have had to fight to get the right support my children need, challenging what we have previously been told and doing a lot of research ourselves. At times we felt we were not being listened to. It feels like we have had to become specialists in our own right, whilst also caring for children with additional needs that can be very challenging.”

Young person Ellie told us “The mental health professional I saw at the NHS didn’t seem to know very much about autism, so they didn’t realise that the appointments themselves were very stressful for me. I don’t think they always believed me when I said how bad I was feeling because on the surface I appeared to be okay.

“My mental distress at the time was extremely high and I was experiencing some very dark thoughts, but I didn’t feel listened to or understood. I would have liked to have had someone like my dad with me at the appointments but that wasn’t an option because they were held at school.

“My mental health has slowly improved since then but that’s because I started seeing someone privately who has experience of working with autistic people. I feel very lucky about this because I know not everyone would be able to afford it.”

Jennifer, whose child is autistic, says “The initial relief of my child being provided mental health support was quickly replaced by concern, as instead of getting better they got worse. A lack of knowledge and understanding about autistic presentation meant the therapist didn’t connect authentically with my child, who in turn felt invalidated by the whole experience.

“The number of sessions offered was limited and at the end of the programme I was shocked to find my child didn’t reach the threshold for further support. Instead, we were provided with a list of community-based support organisations and left to fend for ourselves. As a parent I now have a complete lack of confidence and trust in the NHS mental health system.”

Tell us YOUR story

Whether your child may be autistic, is currently being assessed or has a formal autism diagnosis, we’d like to hear their experiences of mental health services. We’d like to know what went well and what could have been better. Tell us your story online, or if you’d prefer to speak to one of our friendly team in confidence, please get in touch.

This piece of work has now closed.

dementia groups in Northumberland

Living well with dementia sessions

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Dementia groups in Northumberland: living well with dementia

 

These weekly dementia groups in Northumberland from Royal Voluntary Service are designed for people with mild to moderate dementia or cognitive impairment. The sessions offer a range of stimulating and purposeful activities that promote good physical health and mental wellbeing. These include crafts, cookery, nature-based activities, games, puzzles and gentle exercise sessions. Activities can also help with maintaining social skills. Carers are welcome and can take part in the morning sessions and join the group for lunch if they wish.

Berwick Youth Hostel TD15 1HJ: every Monday (not Bank Holidays) 10.00am to 2.00pm.

£12.50 per session including lunch for individuals with dementia (£5.00 for carers if having lunch).

Alnwick Cricket Club NE66 1BL: every Wednesday 10.00am to 2.00pm.

£12.50 per session including lunch for individuals with dementia (£4.50 for carers if having lunch).

Beaconhill Community Centre, Cramlington: NE23 8EH. Every Thursday 10.00am – 2.00pm.

£12.50 per session including lunch for individuals with dementia (£4.50 for carers if having lunch).

For more information or to book please contact Margaret by emailing: margaret.facey@royalvoluntaryservice.org.uk or call: 07500 033349.

 

What is dementia?

The word ‘dementia’ describes a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language. These changes are often small to start with, but for someone with dementia they have become severe enough to affect daily life. A person with dementia may also experience changes in their mood or behaviour.

Dementia is caused when the brain is damaged by diseases, such as Alzheimer’s disease or a series of strokes. Alzheimer’s disease is the most common cause of dementia, but not the only one. The specific symptoms that someone with dementia experiences will depend on the parts of the brain that are damaged and the disease that is causing the dementia. (Alzheimer’s Society).

 

Find more information about dementia support and activities at our dementia page.

Have your say on diabetic eye screening

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NHS England would like to hear from people with diabetes and those who support them, about their views on diabetic eye screening and how to improve the service in the future.

The Diabetic Eye Screening Programme (DESP) aims to reduce the risk of sight loss amongst those living with diabetes by early identification and effective treatment of diabetic retinopathy.

The screening programme invites anyone with diabetes aged 12 years or over for digital eye screening once a year. Your views will help shape the way the screening programme is delivered going forward.

Fill in the survey

You can also give your views for improving the service by emailing: Trudie.metcalfe@nhs.net

All feedback should be submitted by Saturday 6 August 2022.

Read more about diabetic eye screening (including Easy Read)

If you would like to tell us about any diabetes or eye health services you have used recently please get in touch.

new care facility Rothbury

Rothbury Community Hospital update

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Northumbria Healthcare NHS Foundation Trust has given an update on work which will enable a new model of care to be delivered from Rothbury Community Hospital:

 

The pioneering strategic health and social care partnership between ourselves and Rothbury Cottage Care Ltd, which is part of People First Care, will see a package of community care being available for the residents of Rothbury and surrounding villages. The work, which will take up to four months to complete and is being delivered and managed by Rothbury Cottage Care Ltd, will involve transforming the inpatient ward at the hospital into a homely residential care home with the provision of flexible NHS beds.

It is hoped that the community health and social care facility will be opened by November.

The flexible NHS bed provision will be available for patients who need longer-term recuperation and rehabilitation and end-of-life care. The facility will receive clinical support from a team of district nurses, GPs and nurse practitioners and will be provided alongside healthcare currently provided in the community and in peoples’ homes.

The clear admission criteria we have for both services should give confidence in the care that will be provided whether someone is in an NHS or resident care bed.

Stark lessons learnt from the last two years include that healthcare provision needs to be flexible if it is to be sustainable and that the focus should not be on beds, but on what is going to enable patients to get better and recover as quickly as possible and the best use of our staff and resources. It is clearly evidenced that medically fit people should not be in hospital beds.

It is fantastic that we are able to be part of a partnership which offers holistic care for people. We are also mindful that this is a new model of care so a detailed review of the NHS provision will be done at three and six-month intervals. They will include the number of admissions to health beds, reason for admission, length of stay, if patients are unable to access the health beds, including their reason for needing admission, and feedback from staff and patients. We can then make any changes that we need to.

This is the first time that Rothbury has had a residential care home within the village. Rothbury Cottage Care Ltd want to make the environment as homely as possible. The 12 rooms will all be en-suite and residents and NHS patients will enjoy home-cooked food which will be prepared on the site and have access to a day room. There will also be a laundry on site.

The same contractor that originally built Rothbury Community Hospital is undertaking the building work so they have extensive knowledge of the building and we have every confidence in their ability to ensure the facility is of excellent quality.

Other positives include there now being another local employer in Rothbury and supporting the local economy. It is hoped that most of staff recruited will be from the local community and full training will be provided. There will also be a day centre and Rothbury Cottage Care Ltd is also looking to provide home care subject to demand and recruitment. They will start advertising various posts from July.

We are committed to making this partnership work for local residents as we appreciate that people have had to wait for a very long time for a solution. We would like to thank residents and all stakeholders for their patience, feedback and support.

 

Tell us your experiences of using health and social care services in Rothbury and across Northumberland.

Championing what matters to you

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Our Annual Report 2021/22 gives an overview of our work over the year. Filled with local photographs from all four corners of the county, the report highlights how we made a difference to people in Northumberland who use health and social care services.

You told us about your experiences of local pharmacies, home care, dentistry and GP services, helping providers know what matters to you and ensuring your views are included in plans for these services. Our Signposting and Information Service enabled over 3000 people to find out more about support and services in our area, and you can find examples of how the service provided confidential support and information.

View the Healthwatch Northumberland Annual Report 2021/22.

or download a pdf version.

 

 

Tell us about the NHS and social care service you and your family have used recently.

Home care services in Northumberland

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Home care services are a vital way to support people by meeting their health and social care needs in their own homes.

‘Understanding the experiences of people using home care services, then, now and in the future’ was a project designed to find out the experiences of people using services and their family carers in Northumberland. We wanted to find out what is working well for people and also make recommendations for changes or improvements to services, based on what people told us.

This is particularly important at present given the disproportionate impact of the COVID-19 pandemic on those using home care services and their families, and the need to prepare for similar situations in the future.

We also wanted to follow up and extend on our previous work which focused specifically on the Coquet Valley, by gathering the views of people throughout Northumberland. Read Home Care Provision in Coquetdale.

This report is an overview of the findings and draws out key recommendations on the issues raised by those who use services and their carers. We have indicated where the recommendations are for Northumberland County Council Adults Social Care commissioners (ASC) or service providers (SP).

Read our findings and recommendations below:

Home care services in Northumberland

New 999 BSL service

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999 BSL is a new service that connects deaf people to British Sign Language Interpreters remotely through an app or a web-based platform, who then will relay the conversation with the call handler and emergency authorities.

This service has been set up so that no deaf person will be excluded when they need to make an emergency call, therefore saving lives.

There are two ways to reach the emergency services through 999 BSL:

You can use the service in three simple steps:

  1. Open the app (download beforehand) or webpage
  2. Press the red button ‘Call 999 BSL now’
  3. Connect to an interpreter

Read more about the service and watch videos explaining how to use 999 BSL at the Sign Health website.