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respite & retreat

Looking at Respite

Kernow Positive Support will always advocate the continuing need and importance for Respite and Retreat. Now even more than ever, this vital service has proven long-term benefits for those Living with HIV. Although, it has become increasingly more difficult for people to obtain funding. Even Crusaid seems to no longer recognised the need to support special respite and retreat through funding, especially for those who are reasonably healthy and long term. It seems that many statutory and voluntary agencies believe this vital support service is no longer required, especially with the increase of survival rates due to anti-HIV drug therapy. It seems that there is no national standard for the funding of respite, and social services departments in particular differ from region to region.

For example, a person living in one London borough may be able to get complete funding for a week's respite. A person living in the same street, but located within the next borough, may get more than one week. Another person may have to make a contribution towards their respite and yet, another may not be able to get any support or respite at all. This is not a matter of benefits received by any one individual. Experience has shown us that the receipt of Income Support and disability benefits seem not to matter. Moreover, the order-of-the-day seems those that should be providing funding and care needs, do not really care. With the advent of Combination Therapy, the high cost of these drugs and quality of life improvements in some cases, the mindset of those able to fund respite is firmly lodged, that those Living with HIV do not need this support any longer.

On the contrary, HIV is not just a matter of clinical needs; the emphasis has changed. There is an urgent need for those who are HIV-positive to be given a chance to reflect on their quality of life, and more importantly for those who fund respite, to understand and acknowledge the psychological effects that such a diagnosis has on any one individual, no different today than 20 years ago. In many respects the longer one is diagnosed, the more inherent problems may be. Some 20 years ago many people had to face the prospect of very little treatment options, and in many cases life expectancy was extremely short. Respite and Retreat allow people to gain peer support, and a chance to re-evaluate personal circumstances in a specialised and  safe environment. In a high number of cases, respite gives people the courage to carry on, thus lightening the burden on the over-stretched resources of the Health Authority, therefore saving money in the long-term. Those living with HIV are empowered to maintain a less stressful and healthy lifestyle. In the long-term respite has proven to be equally beneficial to those that fund this under-rated support service, and those that we are committed to support and care for.

What is Respite Care?

Respite care is a care arrangement that is different from the day-to-day situation. Respite care can mean a change in either the care setting or the people who provide care services. Respite gives a break, both to the person receiving care and person(s) providing support, in the home or community care setting. The social services, social work departments, health care service providers, or family and friends can arrange respite care. Either the person providing or receiving care may be able to go to another place. The person receiving care may find it stimulating to go somewhere else. On the other hand, the person providing care may enjoy staying in another place.

Respite can take place for a number of weeks, a weekend, or at night-times. Arrangements vary according to personal needs and local policy. This form of care may be provided either in, a local care home or in another county. Respite care can be used so that people can enjoy being with people who are in a similar situation. Respite can also give someone a totally different environment and landscape from home. The social services department or health care provider may pay for all or some of the Respite Care costs.

Alternatively, you may need to pay some or all of the costs. This break is a benefit to all people involved in the care environment. Consider the needs and wishes of everyone when making arrangements. Carers and people receiving care can receive vouchers for ‘short term' respite breaks. Local authorities can provide vouchers. Respite vouchers provide more freedom to choose when and where to take a break. Tell the care manager a couple of months before respite is needed. This is especially important when respite is planned to last longer than a week.

Taking a break from caring.

As a carer, you or the person whom you care for, may be entitled to a break or rest from caring. Your social worker or primary care trust may help to arrange this. Respite care may allow the tasks that you normally carry out for this person to be undertaken by someone else. There are a number of grant giving trusts or local support charities that may help to find funding for respite. For further details, contact your local Clinic or support group. Please note that increasing the length of respite care beyond what was originally agreed may be costly. Get the agreement in writing, even when a care manager arranges a rate and dates of respite. The Respite Care Centre may increase the price for the additional care. The Respite Care Centres may also charge for other costs. Assume nothing. Agree the rates with the care home manager before extending the respite stay. Get the agreement in writing, including the services and costs that are included in your agreement. You can visit the Social Services Inspectorate Standards Website for Joint Review Standards and Criteria at or ask your local support group for a copy of these standards, to assess community performance in providing short breaks.

Am I entitled to free Respite Care?

The NHS may provide and arrange your respite free of charge when you are in need, that provides a break from caring, rehabilitation to help a person re-gain their independence, or recovery from an illness, an operation, or bereavement. Also those who need a change of environment due to their condition qualify. Social services and NHS care providers agree how they will meet local needs. They set their rules according to their resources and Department of Health guide lines. Each local NHS service provider has its own set of rules for  providing free respite care. Ask for information about eligibility criteria for services and funding. Ask your named nurse or care manager for their leaflets. They should explain how your situation meets the criteria for services and help with paying for respite. You may be dissatisfied with the result of the assessment of your eligibility if this is the case you may request an independent review to have the decision reassessed.

What are eligibility criteria?

Eligibility criteria are the guidelines which social services or NHS use to assess your eligibility to receive  services or funding. By using these criteria, service providers can ensure that they use their money to help those people most in need. People most in need are called 'at risk'. Every local and health authority is required to publish papers that describe the eligibility criteria they apply. If they consider you eligible to receive help the authority may apply additional criteria. These may limit the amount of care or funding that you receive. Most of these guidelines are reviewed annually. Local service providers work together to set eligibility criteria this involves health authority and social  services providers.

Where can I find out about local criteria deciding who can receive services?

Every social services department and health care service provider is required to publish documents describing local criteria or priorities. Ask your care manager or social worker for the leaflets. Ask them to explain how your situation fits the criteria before making care decisions. You have the right to ask for an independent review of how they applied their criteria if you do not agree with their decision.

Who can I turn to, if I am still not satisfied with this decision and its criteria?

You can contact your local support group, who may be able to give you further advice and maybe able to advocate on your behalf. You have the right to ask you local MP to look at your individual case. You may wish to write to a government official whose main ministerial responsibilities are within the issues and services you are concerned about.

Melanie Johnson: Parliamentary Under Secretary of State for Public Health. Sexual health, HIV and AIDS. Complementary and alternative medicine.


Stephen Ladyman : Parliamentary Under Secretary of State for Community. Social care, long term care, disability and mental health, General personal social services, Care trusts (shared responsibility with Minister of State for Health), Mental health services, including the Mental Health Taskforce, Long term conditions, Long Term Conditions National Service Framework, diabetes and renal services, and disability services.

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