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Helpful Carer Advice from a Carer

Sherry Palmer Sherry Palmer has been a carer for her husband for eight years. Here she shares what has helped the most and how to get what you need from the services. “There is major change in the delivery and commissioning of health and social care services.  How do you think these changes are/will affect/affecting mental health services?”
  1. Avoidance and buck passing has been all too common and with the changes taking place it is all too easy for providers to muddy the water. I think that if you can get past the gatekeepers you will find help which can make a huge difference to you.
    After 8 years we have now learnt to say if you are not the person to help me who is.
  2. The problem now and in the past has been that there is help out there but it seems to be kept a secret; the reason for the secrecy could be to save the staff too much work, there are also far too many assessments just to get to the treatment, this is an extremely costly process, and in my opinion a lot of wasted money.
    While at the present time there seems to be no way of avoiding these assessments, it is still vital that we find out all that is available to us.
  3. Whilst some staff seem to have been brain washed into believing that they are the “Cinderella service,’’ they remain negative about giving out the information on what services are available, whether this is because of poor knowledge or lack of confidence the result remains that the service user has no service. They seem to hoard their services, the problem with this is that service users remain ill through lack of treatment and the ‘’figures’’ only show that service users are not interested or are not engaging. This does not reflect how many service users are not properly informed of their options and therefore are not given an informed choice on their recovery plan.
    We must start asking for more information on all of the choices that should be made available to us so that we can then work together for an effective recovery plan.
  4. The service users and their carers are expected from day one of their illness to have a full knowledge of their condition, the way the system works and what is available to them. The truth is you know very little and are told even less.
    I found the carers information pack the most useful, it supplies information on what voluntary bodies are out there to help you and they in turn can then point you in the right direction to find out more about individual illnesses and who to contact for specialised help.
  5. The service user and their carers are often expected to jump through one hoop after another on a quest to try to obtain some sort of service, this is often impossible for the service user in the early days, and is extremely difficult for the carer as well as being completely unnecessary and without benefit to them.
    Again this often comes down to poor communication and little help.
    The easiest way over this obstacle for us was to think about what we needed, make a written list and hand it to all staff that we came in contact with. If you have made it clear what you need then it should be easier for the professionals to try to supply you with your requirements or where this is not possible give you the reasons why.
  6. It is time that we stop listening to what we cannot have and start bouncing back at the services that we want what we can have.
    Again the written list helps here.
  7. What seems to be forgotten by the service providers when the illness first takes hold is that there is usually a family trying to continue with their everyday lives as much as possible. For the spouse of the service user there is usually a tremendous amount of stigma for them to get to grips with, they may need time off of work which many companies may not tolerate and in some cases may make sure that their worker is left to feel insecure in their position if they do not attend work. For any children within the family unit, they may have exams due or homework to complete and again there is a lot of stigma for the child when trying to explain the situation and in many cases very little support or understanding of what extra stresses the child may be under. Often the child is given extra responsibilities forcing them to grow up far sooner than they should. The implications of this can seriously affect their own wellbeing with their own problems being kept to themselves.
    Through the young CATS training a serious issue was highlighted in connection with safeguarding. It became apparent that when a service user has medication to be taken and their carer/s are children, due to confidentiality, there is no consultation made with those carers of the possible side effects to look out for in connection with the medication. This leaves that child vulnerable, insecure and without the facts needed to properly care.

    There are certain rights that an employee has in connection with being a carer which are well worth checking into if a carer is experiencing problems at work because of being a carer. For a young carer or child with a parent who is a service user there is often the pastoral care department at schools that may help if contacted and if the young carer is also the primary carer then a referral can be made to Barnardos for additional support for them as well as help with respite.
  8. The stigma can cause significant harm. When disability hate crime took place against our family our experience was one of distress and antagonism, all of a sudden our family’s word seems to count for nothing because there was a family member with a mental health issue, there was no protection what so ever offered by police or the council, this has caused distrust in the authorities from all of our family members and a lack of confidence within the system of disability hate crime. Whilst making the health and social services aware of our distress no support or help was ever offered by them either.
    What is urgently needed as recommended by Respond and voice uk is that
    • Social workers must be trained on how to identify disability hate crime and help victims.
    • Community safety partnerships must also establish effective third party reporting mechanisms.
    • Primary care providers and social services departments need to provide appropriate therapeutic support for victims of disability hate crimes.

    This would make a huge difference to us!
  9. It is vital that all service users and carers now take control by asking three vital questions to each person they meet who has any experience of the health and social care services, whether they be other service users, carers, voluntary sector or the commissioned services themselves.
    Q1: HOW CAN YOU HELP ME?
    Q2: DO YOU KNOW WHAT SERVICES ARE AVAILABLE TO ME?
    Q3: HOW DO I GET ALL THAT I AM ENTITLED TO?
  10. After over eight years as a Carer I am more familiar with what is out there, however I have also had my fill of negativity from the service providers and had I have listened to them we would not be in the healthier position that we are now in.
    Over the years I have found that there is help in the form of CPN Community Psychiatric Nurses, Outreach inclusion workers, Social workers, Respite at home, Respite away from home, Advance directives or LPA’s lasting power of attorney, CATS Carers awareness training, CETP Carers education training programme.
    Wellness toolboxes, counselling, take a break, talking therapies, support groups, personalisation, benefit assistance, Advocate services, Relaxation and Holistic treatments, and much more.
  11. IT IS VITAL THAT WE EMPOWER ONE ANOTHER BY SHARING THE KNOWLEDGE THAT WE ALL HAVE AND BY STANDING TOGETHER TO MAKE SURE ANY CUTS WHICH HAPPEN DO NOT GO UNNOTICED. WE NEED TO KNOW NOW WHAT WE SHOULD BE GETTING AND START ASKING OR DEMANDING THAT WE GET THIS.
  12. In conclusion the changes can only negatively affect us if we remain in the dark, once empowered with information and the knowledge of what we are entitled to and by making sure we receive this they cannot affect us to the level we fear. The main priority should be that we support one another in achieving this rather than relying on the service providers to furnish us with the information as the lessons learnt to date are that this information is not always consistent or forthcoming.
    The main importance for our families is to put into place an effective crisis plan which can come into force as soon as necessary. Hopefully it should never be needed but from personal experience as a carer we tend to put together a crisis plan which focuses on the service user but not the entire family. If anything was to happen to the carer and no such plan exists then the service user and all immediate family can be sent into turmoil, this may not allow for proper recovery of the carer as well as putting extreme pressure on to the rest of the family. As carers we have a responsibility to make sure we take good care of ourselves and plan properly in case an emergency happens a good way of doing this is by having your own LPA set in place and clear written instructions for your family of what needs to be done in a crisis, this can also help the service user feel more secure.
  13. Sherry Palmer

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