Care and Support - Sharing Experiences

Session for Adults to discuss issues and experiences related to care and support (Sunday 8th April 2018)

This was very successful with 25 adults and young people with SMA, parents and carers getting together. The information in this summary was provided by participants, based on their personal experiences.

Health and Social – key information.

  • Funding for Care mainly comes from 2 sources – local authorities and the NHS
  • The social care element is met by the Local Authority (LA) – sometimes called the Council
  • This is usually through the Social Care department – called Adult Social Care
  • The health element is met by the NHS. This is called Continuing Health Care (CHC)
  • A Social Care Needs Assessment is carried out by the LA to determine the level of social care needed and a budget is offered.
  • Once a budget has been set, the person can receive their care through the Local Authority who buy care packages from care providers and pay the provider directly for any care the person receives.
  • Or a person may be eligible for a Personal Budget from the local authority, which they can receive as a direct payment.
  • The person uses their Personal Budget, via the direct payment, to buy their own care – eg by employing Personal Assistants (PAs) – if they do this, they take on responsibilities as an Employer – eg, paying their employees tax and national insurance, paying into their pension etc
  • In some Personal Budgets an amount is included to pay for an outside agency to help with recruiting and employing Personal Assistants. There are several independent organisations who provide support with finding PAs and setting up the pay roll account.

Tips shared by the group for getting through the Needs Assessment and getting a Personal Budget

  • In the run up to an assessment keep a diary of your care needs throughout the day and night. A blank diary template is available here.
  • Provide a 48-Hour Timeline of the support you need
  • Look at your worst day
  • Decide what you need and how long it takes you to achieve. 
  • Include every little thing you need help with – eg. scratching your nose, smoothing your hair
  • Provide as much evidence of your care needs as you can – from doctors, other medical professionals etc.  SMA Support UK can provide letters of support
  • Some people have used arguments around Safeguarding to demonstrate their need to keep or increase their care hours
  • Carer/s working with a student may need their own separate room which should be paid for by the LA or NHS, i.e. the body funding support.
  • Under Employment Law – a carer is entitled to break every 6 hours
  • In one person’s experience, if you need turning more than 4 times a night then you are entitled to Wake and Watch Night Care
  • Pressure sores are considered as part of the needs assessment and may flag the need for a CHC assessment.
  • Safety – eg vomiting when using BiPap and the danger of choking – should be considered as part of the needs assessment
  • Access to Work (via GOV.UK) can help with costs of support but only for the work place.  
  • It’s hard to get funding for carers to accompany you on travel for work or on holiday.
  • You can keep your care package for up to the first 8 weeks of an inpatient stay in hospital.
  • If you need to appeal against your CHC assessment – in certain circumstances you can attend the Panel that makes the final decision.  This can help your case as the decision makers get to meet you and hear about your needs first hand
  • Always be polite but firm with those who come to assess.
  • Ask the assessors how they will work with you to achieve your goals
  • The health and social care system has become increasingly localised (also known as The Postcode Lottery) – so it is important to explaining your needs fully at assessment
  • Study your local authority guidance (link below to search for your LA) and use them to win your case (eg if the local authority says they have appropriate provision locally, press them to show what that provision looks like)
  • The whole person should be recognised and any assessment should be holistic
  • It’s important to document psychological problems as well as physical problems (see below)

Individual’s Comments:

  • “Prepare yourself for battle”
  • “Don’t “make do” or adapt”
  • “Have a bottom line for what you want and stick to it”
  • “Don’t come across as another angry person in a wheelchair – bring your whole self to the relationship and try to have as good a relationship as possible” (with assessors)
  • “SMA is part of your life not your whole life”
  • “Don’t ever give up!”
  • “Work on achieving your wildest dreams”

Mental Health and Wellbeing

  • The group acknowledged the huge impact that SMA has on their mental health and wellbeing
  • They accepted that a lot people with SMA also have anxiety and depression
  • Moving testimony was given of individuals suffering from anxiety, depression, breakdowns and post-traumatic stress disorder
  • Often these problems surface after an intense struggle to get one’s rights or to be heard
  • Your mental health and wellbeing is part of the Needs Assessment and you should consider your needs in this area carefully
  • It’s important to try to speak honestly with carers about mental health difficulties

Individual’s Comments:

  • “Trust is a huge issue for people with SMA who rely on carers”
  • “Mental wellbeing is adversely affected by societal attitudes to disability – we’re not welcome, we don’t belong”
  • “Latch on to mental health issues and put the physical disability underneath”
  • “Body image and identity are also part of mental health problems”
  • “We need to calm down”
  • “Our body is impaired but our identity is not”
  • “We have to look after ourselves, including our mental health”

As a follow-up to the session, we have put together some frequently asked questions and answers.

Please be aware that access to and delivery of social care may differ depending on where you live in the UK.  It’s important to find information from your own Local Authority (LA).