Many families ask about what sort of equipment they might need for their children and young people. BDFA is unable to endorse specific products or companies but we hope you will find this information useful as to the type of equipment you might need and how it might be supplied.
There are specific things to consider if you are looking for your home to have adaptations, the Family Support and Advocacy team can help with this by writing a supportive letter to the adaptation's assessor outlining the changes that occur for a child with CLN throughout the disease process and ensuring that the space can adapt to any larger pieces of equipment or fixtures that may be required later on. This is especially important for adaptations that support a child through to adulthood and consider the needs of paid care givers in the future.
Some items that will be necessary over time and provided through the local authority or NHS trust in your area are dependant on the level of funding provided, most children will have local authority (council) funding, but as needs change your child's need may meet the thresholds for health funding. We can talk to you about this as can your child's social worker or early years officer.
Typical items that are provided include:
- A wheelchair that can 'tilt in space' with lateral, head, and foot support, a removable tray/table, and support for the back of the lower leg. This would also need a secure lap belt and in time a 4 point harness to aid posture - Your local authority will arrange this through Physiotherapy with local wheelchair services, if the school has a physiotherapy service delivered on site, they will support this as well.
- A height adjustable bed once your child is no longer able to get in and out of bed and walk to the toilet. You will need a bed that can be raised to a safe working height for you, especially if you are helping your child dress and get changed whilst lying down. This bed may need side rails and bumpers when your child is no longer able to independently get out of bed, older children and adults will require a bed with 4-way profiling and one that can tilt up and down at the head and foot ends. Your local services will provide this on loan, normally through NHS services.
- A good quality waterproof mattress that has pressure relieving properties for your child's weight and height, again local services will provide this, at some point if your child shows discomfort in bed an airflow mattress may be required and sourced as above.
- A comfortable chair, particularly when they are no longer able to sit safely unaided, one that can tilt in space and provide good support from head to foot for the home which is comfortable and has the correct support and which is more comfortable than your child or young person's wheelchair. This type of chair is normally electrically operated with a handset for positioning. Again, the referrals for this come through Physiotherapy
- For young adults who are just losing the ability to stand from sitting, a stand aid is invaluable in supporting their independence and protecting your back, through Physio or OT as above.
- An overhead hoist or initially a mobile hoist and slings for day to day and showering, this will be agreed with the Occupational Therapist who is part of the adaptations team in your local authority.
- Supportive footwear, always have your child's feet measured at a reputable shoe shop before buying footwear, as they lose some of the sensations that tells their brain where their feet are and how well they are standing, they can become scared of walking, good fitting footwear that they find comfortable and safe can make a huge difference.
- A bath or shower seat, and for teenagers, or adults who are wheelchair dependant a height adjustable tilt in space shower chair or shower trolley.
- A walker or standing frame.
- Specialist drinking cups, cutlery and crockery - Speech and Language therapist advises on this as part of the regular assessments for safe eating and drinking.
- A suction machine - If necessary, this will be provided following assessment by the Community Nurse team, hospital or specialist Physiotherapist.
Other items that may be necessary
- A specialist car seat
- A wheelchair accessible vehicle - through Motability if your child receives higher care component payments
- A monitor with camera, for peace of mind if your child spends a lot of time in their bedroom, particularly when epilepsy may be an issue.
- An epilepsy alarm
- A tablet device for communication and entertainment
- Switches and switch adapted toys
- An adapted bike
- If you have the space, a dry storage shed or space, as over time you will require pads and other goods on a monthly order, enteral feeds, plastics, syringes etc - these items are supplied on a repeat order through the NHS
There are many professionals who can advise you about the best products to use. You can also contact the BDFA Support & Advocacy team for more information: support@bdfa-uk.org.uk