Disabled and visiting hospital? Who cares?
Disability activist and Fish policyholder and blogger Simon Stevens discusses the legal issues and how people using personal assistants can best manage hospital visits and stays.
By: fishadmin, On: 13 March 2015
Hospital appointments and stays are often part of life for disabled people using personal assistants. Users frequently need support from PAs in getting to, and when staying in, hospital. But there are specific laws covering the provision of personal care within hospitals but these are often not made clear.
The current regulatory position surrounding the relationship between social and health care is that at once you are admitted hospital, in theory Social Services hands over full responsibility to the hospital until you are discharged.. This is further reinforced by the hospital’s responsibilities under the Disability Discrimination Act. In are not that simple and difficulties can arise which affect continuity of care.
We use hospitals in three different ways, each having a different impact on the use of PAs and the relationship with a hospital.
For appointments the user has planned a visit lasting no more than a few hours. Ignoring the theory, the practice will see the PA supporting a user as for any appointment with any organisation. Hospitals are unlikely to interfere with arrangements, seeing them as the same as family or friends supporting a patient Social service departments are unlikely to need to be informed unless extra support is required after discharge.
When a patient requires day surgery or a stay in hospital normally they would only be permitted to have visitors during specific hours as it is assumed the hospital will look after all their needs. It could be argued that, depending on the specific support required, PAs are not visitors but part of the required support. While for insurance and other reasons, they may not be permitted to assist with personal care duties, there may be social and general living tasks they can perform. These might include helping communication with hospital staff or in socialising with other patients. This is likely to depend on facilities for patients and the ward.
The pre-op assessment is the best opportunity for users to discuss their support needs and to agree the role of their staff during their stay. It can often be good to have essential information prepared, sometimes called a ‘communication passport’ which can detail for hospital personnel information about a user’s medication, next of kin and their relationship with their staff. For direct payment users social services will not often need be involved, with short stays deemed a normal part of life and admission and support needs arranged without outside interference.
Typically these involve emergency care after an accident or immediate health concern. While with a planned visit, users may be able arrange for the capable and/or reliable staff to accompany them, in emergencies they may have little choice. If a staff member is relatively new managing them in a new and stressful situation may be harder. It’s also possible that no support staff are available it’s important to consider the additional difficulties this could present..
Hospital staff may also be not fully aware of the PAs role as there was no previous discussion. This can lead to misunderstandings and communication breakdowns. It is also tempting for over-stretched hospital staff to ask and rely on user’s own staff to do personal care tasks – because “that’s what they are paid for” – without realising the legal and insurance implications. Users and personal assistants must be empowered to say no and explain the role without having a showdown with matron!
The most difficult way to visit hospital is an unplanned admission after a serious accident or a quick onset of a illness. The main thing to understand is that the length of stay is unknown often until the last moment and the needs of a user after discharge may be different and uncertain. While the user may be seriously ill they are still responsible for their staff. They need to be kept informed and paid on time. While users are in hospital, things like laundry and opening post, still need to be done at home. Users will need to balance the support they need in hospital and at their home. This is no mean feat and will require patience and understanding from the hospital, users and staff alike.
Since the support someone needs after discharge may be different or, in worst case scenarios, their stay is likely to be more than four weeks, they need inform their social services departments, who will have differing policies in this matter. The longer users are in hospital the more likely their benefits and funding are going to be affected. The key to minimising disruption for all is good communication.
A final point to consider is the impact on support staff after discharge. Even if a user’s long term needs are not altered, additional or different support may be required in the short term This might involve tasks any patient would normally be expected to be able to do for themselves, or with the assistance of family and friends, while others may need specialist medical expertise. It may be reasonable to ask PAs to do the former, but not the latter. It is therefore important this is raised at discharge so that, say, district nurses can be provided. It is useful for users to have this discussion before they are discharged to avoid later difficulties as staff rightly refuse to do tasks which users believed they would perform.
When inducting PAs users should discuss their needs in the event that they require hospital treatment and how they may their own responsibilities to their staff when temporarily incapable. It is also worth discussing concerns at relevant support assessments.
Hospitals should be treated as a friend not a foe. The more they know, the more they can accommodate a user’s needs. Time is often a scarce resource in hospitals, especially in emergencies, and so the more preparation the better. If users are prone to unplanned admissions, they may want to consider having a bag packed ready, especially if they have periods on their own. It is also important staff know what to do in such emergencies and that they can trust users to communicate effectively with them.
Going to hospital is a part of life most people do not think about. But those that use support staff must – and be more prepared, especially in terms of managing their staff. Planning will make the experience less stressful.
* Remember if you have Fish’s full cover Independent Living Insurance policy you can access expert advice on employment and human resource issues around the clock. For more details on the benefits of this pioneering insurance policy for people using direct payments and personal budgets click here.