What would you like to be when you grow up? Do you remember the question? All the answers we gave as children always saw us thinking of ourselves as successful high-flying achievers. One of the things no one imagined was the possibility of things playing out differently. Unfortunately, even with perfect planning, the uncertainty of ill-health sometimes rears its ugly head striking us or sometimes our loved ones down.
In some families, the ill-health of a loved one does not come without demands. These demands are mostly down to the constraints imposed on the family’s financial, emotional and even mental abilities. Coping despite these new stresses can be almost impossible.
Sometimes the illness of the child means that the current home may become unsuitable. It is very heartbreaking for a family home to be assessed as unsuitable for the child . It can leave the family members especially the main carer feeling helpless and inadequate in this regard.
Some parents can be left feeling like they have failed in their duty of providing a safe place for their child to live in. Some have gone on to have a resentment towards the Health Care Professionals (HCPs) who make this assessment. These feelings are quite common but it’s important not to see these HCPs as enemies but as people who have stepped in to support the family.
Many families find in the course of caring for their loved one that their current living arrangements may need to change. Homes may need to be redesigned to accommodate equipment like wheelchairs as the mobility needs of the sick child deteriorates. Some families may need more space to accommodate specialist equipment in addition to existing ones in the home. Endless reasons abound why formerly comfortable and cosy living arrangements may become inadequate.
Moving house can sometimes be the inevitable option for a family. It is a difficult decision to take and carry out. Housing can be a very personal and emotional subject for most families. A house over time becomes a home, a haven and safe place where most family memories are created. The prospect is even made harder for a family with a sick child to contemplate.
For this category of families, moving house not only entails the actual house “move” but also means that the services that support the family may have to “move” as well. The structures that have become part and parcel of the family’s coping mechanism may have to change.
When there is severe illness in the home, support although readily available may be inaccessible to the family for reasons such as lack of information, time or a simple dis-interest. Over time as the family becomes even more pressured, they begin to become more aware of support structures and gradually access them.
Accessing support requires time, patience and adjustment. It is hard to accept the interference of other parties in the home however well intended. Once accepted, families begin to adapt to their new routine and fit in this support into their daily routines to the point of comfort. This leads to a smooth flow of seamless support from the community to the home.
When house moves occur, structures which are mainly tailored to suit the family’s peculiar needs may become altered, irreplaceable or totally lost. The prospect of this change can put a family off from taking the next step in accessing more adequate accommodation. Some families are lucky enough to find suitable housing within the same locality. For those who have to move far away, the case is totally different and adds to the already stressed family setup.
Change of energy suppliers and familiar infrastructure which seem quite normal can be very disruptive to a family with a sick child. Children may need to change schools. For siblings or children in the home this can be very traumatic. The school setting is more than a place of learning to them. It is a hub of stability, a safe haven.
The social ties and friendships formed impress greatly on them emotionally and psychologically affecting their overall well-being. These social ties protect their otherwise fragile and delicate emotions from the goings-on at home. Changing schools can bring even more disruptions to an already chaotic home setting. The familiar school setting can be the one “constant” amidst the dynamism that sums up their daily lives.
For parents who live in the same community but have moved far from the school, the commute may be too strenuous for them to embark on with their children. Support exists within the community to help families through this adjustment process. The children and family practice, carers UK and even the social services can advise on issues relating to home-to-school transport, volunteer school-run groups.
Changing the GP surgery can be another inevitable change to expect during a house move. The GP surgery is a structure that can evolves into a hub of information for the family. Many GP surgeries in addition to providing primary health care to all families act as sign posters to other services within the community that can support families with sick children. GPs kick start many support and diagnostic processes by making simple referrals which help families access further help. Moving houses may mean changing surgeries.
It is normal to feel lost at the prospect of changing GPs. However it is worth noting that since 2015, all GP practices in England have been free to register patients outside their catchment area. Although this is totally at their discretion. it can be worth discussing your family situation with the surgery if you feel your child or loved one may not cope with the change. Things are easier when discussed with the right people.
The cost of moving home may be of concern to the family. There is support out there to help families through this process. This can be provided by the social workers and/or community paediatric teams. In some cases where a bigger home is required to accommodate the needs of the sick child, the family faces two options:
- Secure a new home on their own if they can afford the rent or mortgage or
- Secure a new home by applying for social housing through the local authority.
The family may not be able to afford the specifications that the hospital considers suitable for the sick child. In such cases social workers can guide families through the process of applying for social housing.In the UK where social housing can be accessed, this may be the next option for a family that falls into this category. The process involves getting the family home formally assessed before a referral can be made to the local authority. Different councils and boroughs have different procedures and criteria. With a shortage of social housing around the country, applicants are put on a waiting list.
The position assigned to a family on the waiting list depends on the family circumstance, the urgency (for example if the availability of adequate housing might delay discharging the child from hospital) and the severity of the illness in addition to many other criteria. Some councils may provide temporary accommodation for families in the meantime. This short term assistance to the family also comes with some added stresses and anxiety.
It is not compulsory to have a social worker during this process. However because they are well-informed and experienced with issues of this nature, families do find their input in this area to be invaluable.
Similarly, families that can afford their own housing will not need to worry about social housing and waiting lists. Such families can consider getting suitable housing privately. Details from the assessment of the current home can guide a family when choosing their new home.
When the new house is found by either option, it is important to get the HCPs to assess the new home as suitable before committing to it. Making commitments and signing any legal agreements may be a waste of time, effort and resources if this is not done. The new home needs to meet the health criteria set out by the HCPs. Non compliance will not stop the home from being rejected if it doesn’t meet the necessary health criteria.
More information about housing and options can be found on the government website.
So have you experienced being told that your home is not medically suitable for your sick child? What did you do? How did you feel? The other members of the family accept this change. Please feel free to tell us all about it.
Thank you for reading.
If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series.
Photo credit: Pixabay