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Moving to Long Term Care

scottish huntingtons association gene patch long term care

When choosing a care home it is important to build up a picture of what you would like. Think about what you need, what you want and look at what is out there for you. You may well have an idea of what your expectations are, however, there can be big differences between care homes, including fees and opportunities offered, therefore, take time in selecting the care home that will suit your lifestyle.

There is no doubt that there will be some upheaval for you, however, if planned correctly this move can be a positive and enjoyable experience. Speaking with your family, Social Worker and HD Specialist may help you make important decisions. It is recommended that you visit a few places so that you are clear about the level of care that you need. There are different types of homes and making up a checklist may be a good starting point for you.

Sample Checklist

  • Is the home near my family and friends?
  • Is it close to local amenities and public transport links?
  • Does the home have a nice atmosphere?
  • Is the building well maintained and cared for?
  • Does the home smell clean?
  • Do the rooms have en-suite facilities?
  • What would be the view from my bedroom window?
  • Is there an activities person and what opportunities are there for going out on a weekly basis? Does the home have its own transport?
  • Are there communal areas? Are they well used?
  • What arrangements are in place to safeguard money and valuables
  • Can my family and friends visit at any time?
  • What facilities are included in my weekly care costs e.g. hairdressing, entertainment etc
  • Are there extra charges for anything?
  • What arrangements are in place for people who smoke?
  • What would happen if my needs changed and I required specialist equipment which I could not afford to buy?
  • Are nutritional needs catered for? What if I need lots more to eat than anyone else?
  • Are staff knowledgeable in Huntington’s disease?
  • How many staff are on duty during the day and at night?
  • Will I always be assisted to attend any health appointments?
  • Can I get up when I choose? Will it be a problem if I like to nap during the day?
  • Can I take my belongings into the home? Are there restrictions on this and what could I expect in my bedroom when I move in?
  • If I don’t have family or friends, would an advocate be appointed for me?
  • What is put in place to ensure that I have my say in the home?



Financial Planning

One of the biggest questions asked when someone is moving into long term care is what will it cost, will I have to sell my home to pay for these costs and are there extra charges for anything?  It is important to find out about all these things before making a final decision.  Personal care costs are free in Scotland.  For more information on financial guidance please visit www.careinformationscotland.scot and www.independentage.org (Guide 52:  Care Home Fees: Paying them in Scotland)

A full financial assessment of your ability to contribute towards your care costs will be carried out by your local authority.  Things that will be taken into account include ownership of property, pensions, benefits and savings.

Your contribution towards care costs depends on how much money you have.  As at 2017, if you have more than £26,250 you are in the ‘upper limit’ and would ‘self fund’ your place.  There would be no help from the local authority.    If you have between £26,250 and £16,250 you would pay a contribution.  If you have less than £16,250 the local authority would fully fund your placement. There are no indications on personal expense allowance changes as yet.

Once you move into care you continue to receive your benefits, however, you will have to contribute all of your weekly income, including private pensions, towards accommodation costs.  You will be left with a personal allowance (currently at £24.55) per week and the Disability Living Allowance mobility component, if you are in receipt of this.

What would it be like living in a care home?

Although it can be difficult having to move, some people feel a sense of relief as they recognise their need for more support.  Remember this would be your new home.

Across Scotland, there are many people settled and enjoying life in a care home setting.  Two positive examples of this are “I love it here.  Staff are brilliant” and “It is absolutely fantastic.  I get out all the time, the food is good and I can lie in my bed until lunch time if I want to.  No-one rushes you to get up”.  For more information please visit www.longtermcare.com

Nowadays, most homes have single bedrooms with en-suite facilities and, usually, a few items of furniture.  You will be able to furnish and decorate your room to your own taste.  Bringing items in from your own home will personalise your surroundings and should make you feel more settled.  You will have a named nurse and/or key worker.  This dedicated person ensures that you have everything you need and that you are happy in your new home.  They should also make sure that a structured and meaningful day is planned for you.  Most care homes organise activities in the home and have an Activities coordinator.  Outings and social events are also planned.  Many homes have their own transport. 

Comfortable living areas promote socialisation, if this is what you want.  Some people prefer to spend a lot of time in their room.  The care home staff will ensure that you are taken to all your health appointments, however, many of the health professionals now visit care homes, including GP’s, dietitians, chiropodists and opticians.  All homes have ‘open’ visiting so that your family and friends can come and see you at any time.  Often pets are allowed too.  Some homes provide specialist equipment e.g. profiling beds/chairs, however, for those that don’t, you would be expected to purchase these.  In some areas, funding can be secured to help towards buying equipment.

If you are unsure about a care home, ask if you can visit several times before you make your decision.  You may want to go and spend the afternoon there and, perhaps, extend this to lunch or evening meal.

What if I am not happy in the care home?

If you are unhappy about anything in the care home, you should discuss this with your family or a staff member in the first instance.  If you don’t have anyone to talk this through with, you can speak to your named nurse/key worker or your social worker.  If you are dissatisfied with how your concern is dealt with, you, your family or someone who can speak for you can contact the Care Inspectorate.

Please visit www.careinspectorate.com

The Care Inspectorate are an independent scrutiny and improvement body for care services in Scotland.  They make sure that people receive high quality care.  They have developed a ‘scoring’ system of 1-6 (6 being the best score possible) to highlight how well a home is performing.  They inspect care homes, usually twice a year, and then send an Inspection Report to the Care Home Manager outlining what they are doing well and what recommendations they are making.  A copy of the home’s inspection report can be found on the Care Inspectorate website.  Anyone can request a copy of these reports.

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