Getting the right support
In this section, we have put together some tips and ideas to help you in your caring role. We have also given an overview of the teams that can provide advice and support (routinely or in crisis) to maintain your loved one’s care in the community.
Be prepared for anything
If you have a son or daughter with a learning disability, autism or both with behaviour that challenges, you do not need us to tell you that attention to detail is vital. No matter how busy or tired we are, it is important to try to be as organised as possible.
Planning and record-keeping will really help you manage from day to day and cope if things start to wrong. It will also facilitate discussions with education, health or care professionals when they are called on to help. It is a good idea to keep key documents together in one place, including the contact details of all those providing care and support. This will help all those involved to work more effectively, both individually and as a team. Most importantly, it will help everyone to meet your loved one’s needs.
Maintain plans and records
There are a number of helpful documents to help support someone with a learning disability, autism or both, whose behaviour may challenge. Some of these are listed below.
• Communication/Hospital Passport
• Positive Behaviour Support (PBS) Plan
• Health Action Plan (HAP)
• Person-Centred Care Plan (PCP)
• Social Care Plan
• Activity Planner
• Education Health & Care Plan (EHCP)
• Health & Care Diary
• Contacts List
• Crisis Plan
All these are explained in this section.
A Communication Passport contains information about a person with a communication difficulty. It can be used to help the person explain to others how they prefer to communicate and what is important to them. It can help staff, carers, medical personnel or anyone who is in contact with the person, to get to know that person better. Here are some examples:
- This is me: My Care Passport
- Communication Passport (A book about me)
- Health Passport (Homerton)
- My hospital passport (National Autistic Society)
- This is my Hospital Passport
- Multi Me (a secure social platform and online person-centred toolkit that helps individuals and families build their own Circles of Support through the sharing of multimedia, secure messaging, goal setting and event planning) https://www.multime.com/
- This is me: My Care Passport
Positive Behaviour Support Plan
This topic has been covered earlier in the section about ‘Living with behaviour that challenges’. To recap, PBS is an approach that is frequently recommended in the support of someone who exhibits behaviour that may challenge those around them. Detailed assessments can be undertaken to try to understand the cause(s) of the behaviour and strategies developed to help better meet the person’s needs, in order to avoid the underlying cause of any challenging behaviour.
Once the behaviour(s) are understood and strategies developed, a PBS plan can be developed and then adopted by all those providing support.
Positive Behaviour Support Planning Challenging Behaviour Foundation
Positive Behavioural Support: Practical Tools to help you PBS Academy/CBF
Health Action Plan
A Health Action Plan (HAP) is a personal plan used to record all the things that a person needs to remain healthy, including any help needed to achieve it.
An HAP will contain a lot of personal information, such as:
- all about me;
- who supports your loved one to stay healthy;
- how they communicate;
- medical history and diagnosis;
- any sensory needs;
- mobility, physical or mental health concerns;
- problems eating and drinking;
- diet and exercise;
- a list of health appointments tests and check-ups; and
- Most importantly, an action plan that lists what needs to be done and when.
The plan will usually be developed and written by the Primary Care team led by the GP, the patient or the health facilitator, and with the help of carers and supporters as appropriate.
Make sure that the GP has recorded your loved one’s disabilities and medical conditions on the GP Practice computer system to help them understand their needs. This is called ‘flagging’. Your loved one will then be offered an annual health check as well.
If you are a carer, make sure this is recorded as you will also be entitled to a regular health check. A carer is anyone who cares, unpaid, for a friend or family member who, due to illness, disability, a mental health problem or an addiction, cannot cope without their support.
At the annual health check, your loved one’s GP and/or the Practice Nurse will go through questions and carry out all the checks needed. These are updated on the GP practice computer system. Once this has been completed, an HAP can be printed off and given to you to keep. If you have any questions, or think something might have been left out, ask your GP or Practice Nurse straightaway.
Share the completed Plan with everyone who supports your loved one so you can all work together to make sure that their health needs are met. You can find out more about getting support from your doctor at: https://www.mencap.org.uk/advice-and-support/health/dont-miss-out
My Health Action Plan Surrey Health Action
Health Action Plan NHS South West Essex and Essex County Council
Person-Centred Care Plan
Person-centred planning helps a person plan all aspects of their life. Putting the person at the heart of their care gives them the opportunity to take control of the things that are important to them and the outcomes that they want to achieve. It is an ongoing process requiring regular reviews to make allowances for any changes of need or priority.
Personalised care and support planning NHS England
What person-centred care means Royal College of Nursing
Writing good care plans: A good practice guide Derbyshire Healthcare NHS Foundation Trust & Care Coordination Association
Care and Support Planning Helen Sanderson
Social Care Plan
Local Authorities are required to assess needs and provide social care services for anyone who meets certain criteria. The assessment must be provided to all people who appear to need care and support, regardless of their financial situation.
If the person is found to be eligible, a Care Plan should then be co-produced by the appointed Social Care professional working together with the person, their parents and supporters as appropriate.
Getting social care services when your child has additional needs Contact
The Care Act: assessment and eligibility SCIE
Assessment, Eligibility and Support Planning Disability Rights UK
Care Act Factsheets Department of Health & Social Care
Care and support statutory guidance Department of Health & Social Care
A guide to the Care Act 2014 and other laws
An activity planner is a simple grid or timetable on which planned events and activities are recorded for a predefined period. The planner can be drawn up by the person based on their wants and needs, assisted by their carers and supporters, if appropriate. Predictability and routine are often reassuring and empowering, so this also gives the person more control over their daily lives.
Formats vary and there are plenty available of templates online. In a formal care environment, providers may have their own forms and templates. In other settings, a straightforward grid may suffice, such as the one you can find at: https://www.teachingideas.co.uk/planning/editable-timetables.
Education Health and Care Plan
Introduced as a part of the Children and Families Act 2014, an Education Health and Care Plan (EHCP) outlines the education, health and social care needs for children and young people aged up to 25 who meet the criteria, and the provision required to meet those needs.
Education, Health and Care plans Contact
Education, health and care plans in England National Autistic Society
Education, Health and Care plans IPSEA
Health and Care Diary
Maintaining a Health and Care Diary can be immensely useful in tracking variations in moods, behaviours and medical symptoms, alongside any changes to strategies and treatments. Keeping a record of health-related appointments, interventions and changes in symptoms or behaviour can be helpful in keeping track of everything. It will help you give accurate information to your doctor or anyone else involved in your loved one’s care. It will mean that any decision-making is based upon accurate information rather than relying on memory.
There are a number of diary templates and apps you could download and use, depending upon the device you are using. It can be very effective to create and manage your diary on a computer with a word processing programme (if you have access to one) as you can record anything you need to and you can retrieve information easily by searching for ‘key words’. A simple three column table format can work well. Please see Appendix B for a basic example you can change it to suit your needs.
Do not forget: if you keep an electronic diary, always keep a backup copy.
When your loved one has a disability and may be in regular contact with a number of health, education and care professionals, it is a good idea to keep a comprehensive list of their contact details in one place. Otherwise, it can be very frustrating having to wade through loads of emails, letters or reports to track down someone’s phone number or email address if you already have 101 other things to do.
There are many address book templates and apps available for download on the internet. You can also create one on a computer, if you have access to one.
There is a suggested template you could use at Appendix C, which includes columns for: name, job title, organisation, address, telephone number and email address. Again, always keep a backup copy just in case.
In the previous chapter, we introduced a document called My Backup Plan. Although it is a lengthy document, we strongly recommend that you complete and add it to your ‘Important Documents’ folder.
As previously explained, a Backup Plan enables you to record details of routines, early warning signs and triggers, coping strategies, support network details, and care and support needs/preferences during a crisis.
The Backup Plan, Contacts List and Health and Care Diary templates can be found in our downloads.
Keeping track of things
Sometimes being closely involved can make it hard to see a situation clearly as a whole and think objectively about it. It can be helpful to imagine you have been asked to review another family, very like yours, to work out if their situation is sustainable. If it is not, identifying where the gaps in support and provision are and what needs to be done to fill them is invaluable.
Consider the following questions. If the answer to any of the questions is no, write a short summary of the problem so you can discuss it with your support team. This will help to identify and develop potential solutions.
Questions to help you keep track
Are your loved one’s health needs being met and are there any gaps?
Are your loved one’s care needs being met and are there any gaps?
Are your (the carer) health and care needs being met?
Is the current situation sustainable?
Are all plans and assessments up to date? (This includes care reviews, carer assessment, annual health check and routine checks as per the health action plan.)
Are any significant events or changes in circumstances planned?
Is there help available in a crisis? (For example, family, contingency, support network)
Is a Crisis Plan in place?
Making a Complaint about services
If your experience of services falls short of your expectations or things go wrong, it is important to follow the complaints procedure (every service will have one) to register your dissatisfaction. Complaints policies and procedures should be advertised on the organisation’s website.
Depending on who you are corresponding with, the way in which disapproval is recognised and dealt with can vary. Some organisations operate a tiered system that incorporates concerns, comments, feedback and formal complaints. If you are making a formal complaint, it is therefore crucial to make sure that you state this clearly. Check the complaints policy to ensure that any formal complaint is not downgraded without your knowledge. It is also important to keep records of all correspondence and a diary of events for reference. These will help if you decide to escalate your complaint later on.
Here are some links to further resources including independent review options, ranging from the Patient Advice and Liaison Service (PALS) right up to Judicial Review (subject to formal and legal process).
Patient Advice and Liaison Service PALS
Making a complaint to your GP or hospital The Patients Association
Feedback and complaints about the NHS in England
Complaining about the NHS Citizen’s Advice
Parliamentary and Health Service Ombudsman
Make final decisions on complaints that have not been resolved by the NHS in England and UK government departments and other public organisations.
Complaints about social care services
Complaints about Special Educational Needs
Contact the Education Department at your Local Authority.
Ask Listen Do : Making conversations count in health, social care and education
Making feedback, concerns and complaints easier for families and carers of children, young people and adults with a learning disability, autism or both
When people can’t agree: Special educational needs and disability (SEND) complaints: A guide for Young People in education 16 to 25
This site uses Akismet to reduce spam. Learn how your comment data is processed.